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A site devoted to the families and people diagnosed with Rubinstein-Taybi Syndrome . |
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1999 Archive
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hello my name is lisa melvin. i am a freshman at fayetteville state university, i am majoring in biology. i want to become a pediatrician. if you will please e-mail me back and tell me your expierences while in college please!!! lisa melvin <nai33@hotmail.com> Hi, my son Gage who is 9 mo. old was diagnosed at birth. I would love any tips I could get to better him. I also want to communicate with someone who understands what RTS is about. E-mails would be great!!! Thanks, A.Potts Andrea Potts drea1978@aol.com Hi again, I just wanted to submit our e-mail address to the list. Allison is 5 and has RTS. We look forward to hearing from you all. BRYAN AND REBECCA BURNS <kedabu101999@pop.dlth.uswest.net:> I have an eight year old son diagnosed with RTS. I would like to hear from other parents of children with RTS. Especially, from Arkansas and if possible physical contact. Sherrice Davis <HMars11746@aol.com> My nephew Timmy has RTS. I try to go home to Texas to visit as often as I can. Each time I see Timmy I am amazed at the changes. My sister, Alicia, and her husband David, are amazing people. They researched everything they could about RTS and Alicia started a nutritional study for RTS children. Her and David fight insurance companies and state programs to get Timmy the best therapy and schools they can. Spending time with Timmy is always a special part of my trips home. He is a happy child that loves watching airplane videos with Grandpa. Seeing the family is great but it is seeing Timmy and all of his accomplishments that make the trips extra special. My sisters strength and fight to do all she can for Timmy has been an inspiration. I love you Alicia and keep up the good work you do for all with RTS. Love to Timmy, David and Timmy's little brother Richard too. I miss y'all, TaTa Christy Christine Masters <christine.masters@metrokc.gov> We have a 5 year old daughter with RTS. We are currently looking for information on disipline, potty training, and feeding.Any tips? We just got this computer so we will figure out how to get an e-mail address very soon. Thanks. The sites are great. Bryan and Becky Burns Since a couple of weeks, the Dutch Parent Group of RTS has a homepage of their own. You can all see it at: www.rtsyndrome.nl Peter de Been <peter.been@worldonline.nl>
Your site is very beautiful. It's very important for the carriers of this syndrome to obtain all possible information about your disease. A great job: a great Love. Our hug to all of RTS. ~World Movement of Support and Information to the Family of Children Carriers of Rare Diseases: OUR SPECIAL CHILDREN <ospecialchildren@crosswinds.net> Nova Friburgo, RJ Brazil - hello we have a cute and wonderful nine month old son with rts. we adore every moment with him, and he has brought nothing but joy into our lives. however, like all rts parents we are worried about what the future has in store for us. we would like to get his thumbs fixed as soon as possible because he seems to have a difficult time picking things up. but, the orthopod we took him to told us the longer we wait the better. does anyone have any good or bad experiences or advice in regards to these surgeries? would appreciate any input on the thumbs or any of the following: constipation, stiffness, any night terrors, surgery for testicles, etc. thank you morgan morgan <morganm@nemaine.com> USA - We've lived with RTS for nineteen years. Our son, Ray was diagnosed at 2+ years of age. If you need information we're available at ru3335barb@aol.com See Ya at the next RTS conference. Carol, Roger and Ray Marcotte Carol Marcotte <ru3335barb@aol.com> Rockville, MD USA - Sou psicologa e estou estudando as caracteristicas da Sindrome de Rubinstein-Taybi. Julienne de Freitas Parada <parada@coastalway.com.br> Sao Goncalo, RJ Brazil - My name is Colette, my eldest sister Kay is 31 years old and has RTS. All my family can say or do each day is thank God for the gift of Kay that he has bestowed upon us. She has bought so much joy to each of our lives. Kay suffers terribly from Keloids( large areas of scar tissue on her body).If anyone out there knows of any treatments or cures for Keloids please do not hesitate to contact me. Any advice would be greatly appreciated. n_colette@hotmail.com Colette Ni Shuilleabhain <n_colette@hotmail.com> Cork, Ireland - Hello and thanks to anyone who reads this entry. We are the proud parents of a 3 month-old boy named Riley. His first ten days of life were not easy as a heart murmur was detected and he spent those 10 days in neonatal ICU at Childrens' Hospital, San Diego. It turned out that the PDA valve was a bit slow closing up, and did so on its own, but when the doctors observed he had broad thumbs, we were introduced to a geneticist who introduced us to RTS. Now, Riley does not exhibit many of the described features, but does have a few and that concerns us. He has the thumbs, of course; his testicles did not descend immediately, but did so after about a week and remain descended now; he has a full head of hair and has a few hairy patches (base of spine, nape of neck, peach fuz on calves); he had a now-resolved heart condition; a slight pit on the rear of one ear; has cholic; no other indicators are noted. He shows normal growth, normal responsiveness, vocalizations, normal vision and attentiveness. The doctor seems pretty much unconcerned, but we are still worried. Anyone out there have any suggestions, we would greatly appreciate feedback at our email address. Thank you and God bless. Bill Mathews <tuffydad@nctimes.net> San Diego, CA USA - We have two children Ben aged 14 months and Thomas aged 4.5 years. Thomas was born in New Zealand and was diagnosis with RTS within the first couple of days after his birth. We had not meet any other RTS children until we moved to the UK to live and joined the support group over here. Peter & Rachel Busch <PeterBusch@barclays.net> Bucks, UK - I would like to speak with other parents whose child has had plastic-cranial surgery or have been diagnoised with sleep apnea. I wrote in the RTS guestbook last month. My daughter Nicole is 4 years old. She still has an open anterior fontanel, the soft spot that all babies have but hers has never closed. Her plastic-cranial surgery is scheduled for the end of this year. She has recently been diagnoised with sleep apnea and her doctors are suggesting corrective surgery and a breathing machine. She is a courageous little girl who will, with a doubt, get through these surgeries just fine. It's just Mom who is a nervous and needs some support. Thank you for your help. Karen Houston <mikehouston1@prodigy.net> San Jose, CA USA - I have recently started teacher's college and am working with a child who has RTS. Thank you all for sharing your stories and to those who created such a wonderful site. nancy <nancy.ahrens@sympatico.ca>
Hello, my name is Cheryl and I am the mother of a 9 year old son Kyle, and a 6 year old daughter Megan. Megan was diagnosed with having RTS at the age of 3 days old. I would love to share with you something I wrote for my college English 1 class back in 1995. We had to write about an experience that changed our life (how easy). The Perfect Family On Tuesday, June 29, 1993, at 3:21a.m., my second child, Megan Lyndsay, was born four weeks premature. As they pulled her from my warm womb into the operating room, she cried tears of displeasure and I, tears of joy. In my mind we now had a "perfect" family; a boy and a girl. After the doctors and nurses assessed her, the nurse bundled her up, held her in the air for my husband and I to see, and quickly rushed her into what we would later find out was the Special Care Unit. On that day, I had no idea that this tiny baby girl would make me a stronger person and change my view of the "perfect" family. I was able to see Megan for the first time the next day. I looked into her incubator and wondered how my husband could say she was so beautiful. she did have a nice head of thick black hair, but the rest of her I did not find quite so appealing. She had skinny little arms and legs, a purple birthmark in the middle of her forehead, swollen eyes and nose, and a strange looking chin. The wires conneting her to the various machines frightened me. As I held her for the first time, I began looking her over and discovered that she had unusual-looking broad thumbs. I asked questions and was told by the nurses that they could not answer them, but the Genetics Specialist had scheduled an appointment for Friday to explain everything. This was a signal to me that something was very wrong with my baby girl, and I was not sure that I could handle that. On Friday, the conference room's atmosphere was one of apprehension. The Genetics Specialist began the meeting by telling us that Megan's broad thumbs were a result of a genetic disorder called Rubinstein-Taybi syndrome. As she spoke about the physical anomalies, such as kidney and heart defects, I hardly heard a word she said. The voice inside of my head kept repeating "Please don't tell me she's mentally retarded I can handle anything but that". After about fifteen minutes of speaking of the syndrome, she delivered her final, most painful words, "Mr. and Mrs. Stolz, I must tell you that everyone affected by this syndrome is mentally retarded". My blood ran cold, and I began to cry uncontrollably. The voice was now screaming, "No! No! No! Not my baby, she's wrong!". I left the meeting feeling very confused and defeated and rushed directly to be with my daughter. As I stood above her incubator crying, the reality struck me. I could not fall apart. I had to find the strength. My daughter needed me. From that day forward, the support I gave Megan through painful tests and even heart surgery has given me strength in return. Megan's disability has guided my view in a new direction; toward the reality that a "perfect" family is not just born, but is made. Megan, now two, has many needs. She has eight specialists, three types of therapy, and attends a special education program five days a week. However, as I watch her and her five year old brother, Kyle, play together everyday, I stop and think about how lucky they are to have each other, and how lucky my husband and I are to have them. Although we may not be perfect in everyone's eyes, we are perfect together. I now realize that a "perfect" family does not consist of physically perfect people, but perfectly loving people, and I know that my family would not be perfect without Megan. As I said before, Megan is now six. At the present moment we are pulling our hair out trying to potty train her. She still does not speak very many words, but does know alot of signs, and uses them appropriately. Kyle is wonderful with her and has learned all of the signs along with her. They are so lucky to have each other! I hope to hear from some of you and enjoyed reading other peoples comments. I'm hoping to get Megan's pictures up real soon (just got a scanner). Sincerely, Cheryl Stolz Cheryl and Karl Stolz <kfcl310@msn.com>
We are a family with a great treasure she calls herself Andrea and now tien 2 1/2 years of age she has RTS and they diagnosed it to him with 8 age mese. Andrea highlights for her character a kind character and enseguidada is made want the first greeting that gives to a stranger is a great sonrisa.Andrea he has big problems of breathing overalls in time of colds and flus, also he/she has serious ocular problems as glaucoma and retina detachment also has the thumbs wide and deviated or twisted in it finishes it phalange us we would be charmed of speaking with other people and if this in our hand to lend any type of help that they can necesitar.Andrea takes 6 cirujia operations and sinembargo it is already a happy girl and in their form of being is not noticed so much adversity. After all the bad whiles that we happen alone with the look of Andrea and that love and affection that her she removes he/she makes that all this forgets. Andrea is as having a sky trozito in he/she marries. porteros@jet.es Francisco José Benito Porteros SALAMANCA, SPAIN - Francisco José Benito Porteros <porteros@jet.es>
Somos una familia con un gran tesoro ella se llama Andrea y ahora tien 2 1/2 años de edad ella tiene RTS y se lo diagnosticaron con 8 mese de edad. Andrea destaca por su caracter un caracter amable y enseguidada se hace querer el primer saludo que da a un desconocido es una gran sonrisa.Andrea tiene grandes problemas de respiración sobretodo en epoca de catarros y gripes , tambien tiene graves problemas oculares como glaucoma y desprendimiento de retina tambien tiene los dedos pulgares anchos y desviados o torcidos en la ultima falange nosotros estariamos encantados de hablar con otras personas y si esta en nuestra mano prestar cualquier tipo de ayuda que puedan necesitar.Andrea lleva ya 6 operaciones de cirujia y sinembargo es una niña feliz y en su forma de ser no se le nota tanta adversidad . Despues de todos los malos ratos que pasamos solo con la mirada de Andrea y ese amor y cariño que ella desprende ella hace que todo esto se olvide. Andrea es como tener un trozito de cielo en casa . porteros@jet.es Francisco José Benito Porteros <porteros@jet.es>
We have a beautiful 4 yr old girl, Caitlin. She was diagnosed at birth with RTS. She is currently in special preschool and does very well with the routine. She loves her 14 mo. old sister and does super in interacting with other kids. We would love to talk to others. We are also trying out various forms of communication, but welcome new ideas. Caitlin can say 10 words verbally and can sign 15 words but her recognition is much higher. Ann Whitaker <ann.j.whitaker@lmco.com>
My little sweetie is 7 years old. She was diagnosed with RTS at 3 mo by a genetisist (sp?). Reading these letters I understand that we were blessed to know so early..but then... I was so shocked, sure my infant was a little strange looking, she has strange looking people in her gene pool. I laughed when my pediatrician wanted a chomosome count. He said, Jackie somethings not right here. I told him Ramsi looked just like my grandmother and everything was fine. When the genetisist opened up the book at RTS and I saw a picture of my little angel, I was crushed. I was alone because I didn't expect a diagnoses and didn't bring my husband along for the appointment. That book didn't tell me what a joy this child would be. It only talked of frightening things I didn't understand. Ramsi was stiff as a board when she was born. She had difficulty turning her head to nurse and kept her hands fisted in front of her. We went to a chiroprator. After a few visits of gentle manipulations she lost her stiffness. She also stopped having seizures but I don't know if that is related. The feeding difficulties ended around 18 months and I nursed her successfully for 15 months. She is actually obese now and we are going to stay tuned for the nutritional study coming from another participant on this page. Has anyone else noticed the High pain tolerance that Ann mentioned. Ramsi has it too. I will read this page often. Our children will certainly benefit from our communication! Jackie Dunn <jajadunn@aol.com> Hi! I am a mother of a wonderful 5 year old boy (Mitchell) who was diagnosed with RTS at 13 months. He has filled our lives with joy and frustration. He has a brother Wilson who is 2 and he loves his brother dearly. We are bout to embark on school and would like any ideas that parents could offer about toileting and speech/communication. At this point in time I am willing to try anything! I would love letters or pictures of children in the 5 to 7 age range. You can contact me at my address of PO Box 2053 Whakatane New Zealand Thanks Helen Helen Read <kmcclure@whakatane.ccs.org.nz>
We have 2 beautiful girls,our 1st ,Nicole almost 13,& big sister to Mikayla who will turn 3 on Oct 1st. These past 3 years have been more busy than I could ever have imagined .Mikayla was diagnosed at 7 days old,being born with allthe characteristics of broad fingers ,toes,small head an extra numerical nipple that looks like a freckle.She had reflux from the start,and imediately put on med's to control it,she was collicky for months,meaning she and I (Khishanee) were extremely sleep deprived,thank goodness she's vastly improved,although still not perfect.At 9 months she had surgery on both eye's for Strabismus,and last year she had an Upper Endoscopy that found extreme Osophagitis& while under anesthesia she was fitted with bi-lateral ear tubes as she had suffered from so many ear infections,since the tubes she's only had 2 infections.Just this past Wednesday she had a @nd Endoscopy to see whats going on inside as she still resists her feedings,both bottle and spoon fed meals,only taking small amounts at a time ,and meal times take along time.We finally got her up to 27lbs but can go backwards too easily.Some of her DRs would like her to be fitted with a feeding tube.The results which we don't have yet from the Endoscopy,which help DRs determine whether its truly necessary to do so or not.I'm keeping my fingers crossed tightly that she doesn't have to.She's so close to being normal,and as active and aware as she is I feel she'd have to be sedated constantly to keep her from pulling the tube out,it would set her backward so much.She'll start a special education class at the turn of 3,she has been recieveing Early Intervention since 10 months of age,Physical Therapy has been 1 x per weekas well as Speech,and both homebased,which has been nice,then over the summer we went to a 6 week cousre of OT at our local EIP centre,where we learned about sensory tactile therapies and we now do a brushing/joint compression technique with her and I see some nice possitive changes in her.The biggest change is her level of anxiety when taken into a medical situation.She used to be awfull,getting herself so upset she'd throw up anything inher system leading into refluxing,she recently had an almost tear free 'Well Check' at her Pediaricians,and then Wednesday at the hospital,it was certainly an overloaded day for her.As wel as them drawing blood for themselves ,I had them draw blood for the 'RTS Nutritional Research Program' as well as 2 Xrays of lateral neck and one for bone age study,both were follow up's of previuos ones done to do comparisons.Thank goodness everything went well. I recently joined the RTS List/serve and have found it such an incredible help,being able to chat with and read other families stories.If any of you are noy on this ,you should be. Mikayla has been lucky and not had the glaucoma problems that some children have,however when we visit with her opthamologist next week I won't be surprised if she suggest a 2nd eye surgery ,at least on her left .At last visit she was diagnosed intermediate for a 2nd one.She is supposed to wear glasses that were precribed over a year ago.She will not wear them,no way! Overall,she 's like I said so close to normal.She is non verbal still .Wer'e all picking up sign and use it with her as well as continuosly talking to her,and she is now starting to use some signs to us.Its great to see. Khishanee and Robert Spayde <kpereraspa@aol.com>
Since adding a comment to this page, I have received so many messages from other parents of RTS children. I love hearing about how other parents and families are helping their child. Clay is noe 3 1/2 years old. He is discovering and learning so much everyday...but he is really offended when he is told "no". I know that he is very sensitive, so discipline is tricky...has anyone else had this problem? How do you discipline your RTS child? Carla LeBoeuf <carmadwhit@hotmail.com> I have two beautiful girls. Lauren is 8 years and Nicole is 4. My life changed dramatically four years ago with the birth of Nicole. I no longer take life for granted and I learn from her each day. I feel as though she is "famous" because wherever we go she loves everyone and they smile and love her in return. My husband Mike and I had no idea she had any medical problems before Nicole was born. I went into shock to hear she had 11 heart defects, an open anterior fontanel, and feeding difficulties. Now we take each day at a time. And we get her through one surgery at a time. I would not change Nicole for anything. She makes me laugh everyday and is the happiest child I have ever met. My daughters are the joy of my life. Karen Houston <mikehouston1@prodigy.net>
We are a family in Port Elizabeth, South Africa. Our daughter Melissa is 17 with RTS. We have subscribed to the RTS-list, but would love to know if there are any other parents from South Africa who are on the mail list adele meusel <realtors@netactive.co.za>
I am the father of three children who all have their virtues and vices - Matthew, Leah and Jay. Matt is the oldest at 25 and he has many of the wonderful attributes as well as the difficulties that come with RTS. We are looking forward to moving to Toronto in the near future and are in need of a wheelchair accessible apartment as Matt uses his electric chair to go everywhere. We are also planning a trip to Vancouver where Jay is in his last year of university. We'll hopefully enjoy lots of music in both locales as that is Matt's first love - especially drum machines, keyboards and synthesizers. Jim Dolmage <inclusion@encode.com>
My name is Megan Mascari and I had the honor of teaching Devin Fix, Shelbyville, IN for his first year in kindergarten. Although Devin has RTS, he is very much like every other child. He was such a joy to have in class. I don't know if it is characteristic of all RTS children, but Devin has such a desire to learn. Although he is nonverbal, he is persistent in communicating with people -- through attempted verbalizations and sign language. I have so enjoyed seeing Devin grow over the period that I was his teacher. Devin will always challenge his teachers to challenge him. He is so delightful. I have also enjoyed getting to know Devin's family. As many parents of special needs children know, communication between school and home is imperative. Devin's parents made it so easy to work with them and were so open to trying things. I am proud to say that Devin now goes to school for the full day and spends a fair amount of time in the regular classroom each day. Unfortunately, Devin is with another teacher now, but I take comfort in knowing that Devin will always find something to learn and make the most of the school environment. Miss ya Devin! Love, Megan Megan Mascari <mmascari@juno.com> I am so happy to finally find this site!!!My daughter Katie is a beautiful little girl. She will be three in Sept. She had feeding problems, high arched pallet, 85%deafness, eye problems, and can't speak a word. We are however learning sign language. It has been hard at times ;but she is the sweetest child in the world. I wouldn"t trade her for anything!!!!! Traci Erickson <tmerickson@schreiner.edu>
We have a 4 mon. old daughter with RTS. She was diagnosed at birth. She had heart surgery at 4 days old. She is delayed in many areas but is doing well with physical therapy. It was very hard to accept at first because I guess I basically assumed that my child would be healthy. A friend told me that God only gives special children to special people so He must've known we could handle it or he wouldn't have given her to us. May God Bless you all as you care for your special children. Kris Zimmerman <KZimme@Supernet.com> Have 11 year old daughter diagnosed RTS 3 years ago. Heart murmur,kidney disorder, flat thumbs and toes, facial markings,baby feeding problems, sensitive gag reflex,becomes very fixed on certain things and sounds, very slow learner and developer, unsteady on feet, visually impaired, very easily gets ear/throat infections. Very high pain threshold. Has a teacher aide for 10 hours per week at intergrated school in country. Mother keen to get in contact with New Zealand parents. jacum@xtra.co.nz Ann Cumpstone <jacum@xtra.co.nz> Hello – we were very happy to find this page and possibility to share information about RTS. We have daughter with diagnose RTS. She is 6 years old. She has some problems, but she is satisfied and communicative child. For example is a little difficult to understand her speaking for incomes and sometimes for us too. She has a little problem with stability her walk but she like runing. She has a lot of dark hair. With respect her age she is smaller then others child. We are looking for new information about RTS, because up to now it was very difficult to obtain these information for us. We will be very happy, when somebody will want to communicate about child with RTS and developing possibility in future with us. 08.19.1999 Milan <mimel@post.cz> Having Nikki as a part of my life has been a blessing.. When Nikki wes diagnosed with RTS, I was scare, confused and thought I did something wrong..Finding this group of wonderful people for support and friendship is one of the greatest thing that could have ever happened..I will never look back from where I am now...Thank you all for your kindness concern and most of all your friendship Kelly Porter <mum2nikki@home.com> Having had the opportunity to meet Joanie and her parents, it's not surprising to see this wonderful web page. It describes Joanie very well but it doesn't begin to describe her gentle, kind and supportive parents. The photograph of little Joanie is very acurate. I have been the lucky recipient of her warm smile and a few hugs. Her eyes light up whenever she sees a friendly familiar face. She looks at her parents with such obvious love and it is so touching to see. I would like to take this opportunity to congratulate Chantal and Jean for being who they are and for what they do for their precious little Joanie. I'm so happy to know them. Joanie is a very lucky little girl. God Bless her and her parents!! Julie Oleynik <sahara@home.com> My name is Diana Allaway and my stepsister has a daughter that has just been diagnosed with RTS. Her name is Jessica and she is 5 years old. My sisters name is Annie and up until a couple of months ago no doctor was able to tell her what exactly was wrong with Jessica. Jessica has been through numerous testing and operations and still remains to be a very loving and affectionate little girl. I was searching for some information for Annie regarding RTS because the doctors at the hospital did not seem to have alot of information for her to read. After finding this site, I think she has a better understanding about RTS. It was nice to read all of the letters sent by other families. Thank you for taking the time to reach out to others with RTS and if anyone would like to forward information to me I would greatly appreciate it and will pass it on to my sister. Thank you Diana Allaway Diana Allaway <Sullway@Netcom.ca> I am so happy your daughters health is ok. I pray that all goes well for her,and may the Lord Bless her. Cher....... cher coyle <blackchevy5@hotmail.com>
Hello, I am Christina's sister (guestbook entry below mine). My brother Billy had RTS to and he was the best little guy in the world. My brother and I were always together. I took care of him all of his 11 years and it was the best experience in my life. He was the happiest boy I have ever met and he touched the hearts of everyone who came into his life. I miss my brother so much but I know that he is now taking care of me just like I cared for him. He passed away on November 16, 1990. We all miss him and we will always remember how everyday we spent with him was a blessing. I love you BILLY :) Teresa <prettythecat@hotmail.com>
Hello--I was very happy to find this page--my little brother was diagnosed with RTS and he passed away in 1990 at age 11 with Cancer--I wanted to find out more about this syndrome and seeing all of the pages on your People page has really brought back memories. I really miss my brother. He was a very happy boy and we still love him dearly. Thank you for creating this page:) christina <halcyon@bellatlantic.net>
My sister-in-law would love to hear from anyone who has a child with Rubenstein Taybi Syndrome. Please write her: Jeannie Moody 609 Top Hill Road Brandenburg KY 40108 Lynda Edwards <edwardslynda@hotmail.com>
Hello all, We just updated Quinten's page at 'Our pages'. Peter de Been <peter.been@worldonline.nl>
Hola soy Enfermero y compañero de trabajo en un centro de salud en la ciudad de colima mexico de Maria Elena Preciado quien tiene un hijo con el sindrome RTS y me preguntaba como ponerse en contacto con personas que tienen igualmente hijos con este sindrome ,el chico se llama rogelio maravilla preciado y vive un una poblacion rural del estado .- Tiene 26 años y a logrado avanzar demasiado ya que hoy en dia puede expresar frase cortas e incompletas para indicar sus necesidades . lo que mas desespera a mi compañera es no poder evitar que cuando rogelio tiene una crisis de desesperacion o coraje este se muerde la piel de las muñecas y sus manos tienen diversas cicatrices debido a las lesiones constantes que puede hacer , como parar estos actos , creo que necesita mayor orientacion , ya que el medico especialista de un Hospital de Especialidad al cual lo estuvo trasladando para su tratamiento , solo le informo sobre el diagnostico y no le dio mayores datos al respecto. favor de ampliar la informacion que sobre el sindrome se tienen . Puede contactar esta interesante pagina y espero respuesta a esta peticion .. Gracias jose luis venegas nava <lvenegas_1@hotmail.com> I would love to hear from anyone who also has a child with RTS, and also anyone in Aussie Land, l know that back in 1985 that my adopted son, Joshua.... formerly my grandchild } was the 3rd born in our State of Victoria, and was the 27th in the whole of Australia. l hope to hear from you and promise to answer all emails as soon as they come in. Best Wishes to you all and your very special children. Hoping to hear from you soon. Ace's and Joshua Ace's Smith <highace@hotbot.com> HI I AM A CAREWORKER I WOULD BE GREATFUL FOR ANY INFORMATION ON RTS WITH SEVERE LEARNING DIFFICULTIES. MANDY <brian@mranderson.freeserve.co.uk>
Siamo i genitori Di Luca e stiamo cercando contatti con altri genitori italiani (o che sappiano l'italiano). Pietribiasi Diego <luc26g@keycomm.it>
Currently I am a teacher's aide to a 13 year old girl with RTS and find any information on RTS very useful! Each day brings a new adventure. The student I work with now has a habit of mimicking and I am trying to reinforce her not to but I think part of the compulsiveness that is inherent in persons with RTS. I am glad to have found such a wonderful site on this rare disease! Thank you in advance of any information that can be provided in layman's terms! Becky Zinsmeyer <zinsmebs@maple.lemoyne.edu> I have never heard of this in my life and found it to be truly wonderful that you have put together such a beautiful and knowlegeable piece of infomation, I sure learned alot tonight, thanks so very much Donna <donnadixon@sprint.ca> I have never heard of this in my life and found it to be truly wonderful that you have put together such a beautiful and knowlegeable piec of infomation, I sure learned alot tonight, thanks so very much Donna <donnadixon@sprint.ca> I am a doctor and we just had a patient with RTS Your site is wonderful and I would like to receive information about the syndrome as soon as you get something new! Congratulations for the site! Heloisa Cattini <hcattini@sti.com.br>
We are family providers for Aimee (25) who has been with usfor 10 wonderful years, she is a pleasant, sweet and loveable young lady, we are so lucky to have her in our family. I would like to learn all I can about RTS and any information would be welcome. Alice @ Harvey Hixson Harvey @ Slice Hixson <alice@easy-pages.com>
Matthew as born on June 5, 1979. I found out he had RTS when he was 1 month old. It is hard to believe my baby will be 20 years old next month! I encourage all of you to have your child's neck x-rayed. Matthew has an unfused C1 vertabra and was born without his odontoid process, so basically his neck was like a person who had broken their neck. We didn't discover this until he was 5 years old!! He had to have two surgeries to fuse this cervical spine and still has to wear a cervical collar in the car or in any situation where he might get knocked down. In spite of all this, Matthew is very active. He loves all music... particularly Christian music. He plays his keyboard, drums, guitar and accompanies the CDs! He is such a neat kid. I wish I hadn't worried so much when he was little and had enjoyed him more. Matthew also has sleep apnea and uses a CPAP machine most of the time. Sometimes he refused to use it...like when he is congested. Kathy Hubbard <kwhubbard@yahoo.com>
our son was born in april of '98. our pediatrition suspects that he may have rts. we have had one appt. so far with a genetics counselor and doctor. tyler (our son) was born early and has several problems to conquer. he had reflux, jaundice, undesended testicles, a hernia, double digits in his great toes, broad thumbs, vision problems, constipation, and he seems to develope colds and ear infections at the drop of a hat. he has not yet been diagnosed, but the doctor is almost positive that this is what is going on. we would appreciate any information on rts. we don't know what to expect. he is now 13 mos. old and doesn't crawl or walk, doesn't speak any words yet. several times i have seen that mental retardation is part of rts. is this always the case? are children with rts always handicapped mentally and physically? any information would be greatly appreciated. tonia busler <tbusler@richnet.net> I am the grandmother of a precious angel with Rubinstein Taybi and am interested in any information we can gather. Kim Allred <Kim_a5@hotmail.com> I am so glad I found this site!! For many years I have had no one to share experiences with, get information from, or just talk to. Thank you! Thank you! Diana Diana Muldrow <muldrow@admin.njit.edu>
My daughter Heather has RTS. She is 11months old She and her twin was born 6-16-98. Her brother does not have RTS. We are military the doctors said I was Over protected. But I knew something was wrong. She has all the signs of RTS. Now I know what is wrong with her I can understand her more. She will be getting tubes in her ears so maybe things will get better with her hearing. She is just know sitting up and getting up on her knees and hands.I don,t have anybody to compare my daughters needs to. Iwould like someone that has been through what I,m going to be faced with. She is getting all kinds of therpy at her development center She has reached some of her goals. Heather has 2 brothers and 2 sisters.With our big family we can get through this together happy and well! Her feding problems are getting better. If any body would like to e-mail me please do and share their stories. Theres only a few of us with RTS this Syndrome is very rare. Good luck to everybody. Michele Watkins <Mtwins5@aol.com> I am the owner of a large Christian website. I stumbled across your site quite by accident and find that you do not have a page describing this syndrome. May I suggest this type of page and also please provide me with an explanation of this syndrome. Thank you. Bob Bob Lally <bob@prophezine.com>
would love to chat with other parents of rts my daughter is 12 Lori Maxwell <Spyrodach@aol.com> Our son Daniel is just turning 3 and entering the (U.S.) school system. Of course, he is nonverbal and we are curious as to what communication approaches other families have taken. Currently, Daniel can sign over 40 signs (he understands many more) and we are also working with Boardmaker picture symbols. His receptive language seems to be very good. We are being strongly discouraged against sign language as his primary method of communication. Any thoughts? Karen & David Shavzin <dshavzin@gw.total-web.net> We are doing research on various developmental disabilities and have few children with Rubinstein-Taybi Syndrome at our Center for developmental disorders and complemetary medicine, Pune-India. We would like to share our research in this condition with other researches. Dr. Oswal G.D. <droswalgtherapy@yahoo.com>
I'm an adoptive mom of a little boy names Tyler who is 7 years old, and it is believed that he has RTS. DeeDee Ortiz <DEE13MOM@aol.com> My nephew has Rubinstein Taybi syndrome and I'm interested in any information you can give me, although it looks like I've found alot already. Thanks Jeanne Cooper <bcooper@tima.com> Hello: I'd like to introduce myself, my name is Sylvia & I am the "NaNa" to our special little Michaela. She's 16 months old & was diagnosed with RTS at birth. Everyone wondered, "what is RTS," none of us had ever heard of it & naturally expected the worst. A friend of the family found your website while Michaela was still in the hospital, but told me not to read it until I was ready. When I did, after reading all the possibilities of what we might expect, I went on to read some of the heart touching stories in "My Page" & I found myself thinking how these parents must be very special to be as blessed, as they all feel they are, to have a RTS child in their life. I know there will be many challenges for not only Michaela, both also the family. She is blessed with a wonderful mother, father & older sister, Emily, who is 4 1/2 years old. Emily is bright & active & I think will be a big help to her sister. I try to do what I can to help my daughter out, I live three hours away, but I wish I could do more. She's so busy with doctor appointments, Michaela's classes, etc., but if God handpicks his parents for RTS children, he knew what he was doing, because Michaela couldn't have a better family. Micki, as I call her, is an angel, she's so sweet & undemanding, but when she has your attention she's delighted. She's the type of little girl that grabs at your heart strings & won't let go. We love her so. Thank you for listening & the wonderful support this group offers. I'd be delighted to hear from other grandparents out there. Sylvia & Dave Smoot <frogim@aol.com>
Hi! My daughter Debbie has RTS. She is 17 years old. I am wondering if anyone else has the same problem that we do - severe seizure disorder. Even on anti-convulsant medication, she will sometimes have 10 or more seizures in a day. Kathryn Ford <kathrynford@zdnetmail.com>
Hi,I'am Natalie, a 19 year old proud sister, of Miranda 23 years old who has RTS. Since 5 months I'am living together with my boyfriend Egwin. In our house we have a room, special for my sister, so she can stay a night over and we bake pancakes, or we do other fun stuff. Like last weekend. It was the first time that she stayd the night. For fun I painted her hair copper, because she wanted to look like me (her "little sister"). I've painted my hair a kind of brown/red. When everything was all done, she called our mother: "Mama (mother in dutch) how do you like my hair!" My mother answered (through the phone)whow, how nice green!" so Miranda said "Yes, nice green hair" (Miranda doesn't know colours, but her hair isn't green). Later we baked a cake and Miranda was verry good mood until.... she had to pack her stuff to go home. She needed some help by carrying them downstairs. From upstairs she yelled our names for help. We, not crazy enough to follow her orders instandly, waited for a moment, but that was to late, because she already has trown her radio down stairs, so it broke. After being mad at her and telling her why we were mad, we make up and were friends again. This is just an accample how we live together and can make fun with and at eachother. Miranda is verry important to me as a sister. My parrents never treated Miranda any different then me or my other sister or brothers. So she has learned the same values and norms, so she has become a quit sociaal person, who is strong in talking, but by whom I discover that she doesn't always knows the meanings by a word. People who don't realise this, or don't want te realise this, many times overrate her. A subject where i can get angry with. GOAL!!! I really would like to talk to other family members with RTS, so we could share experiences about our RTS sister or brother when they are growing up. I could might help some younger children who don't really know how to deal with the environment and the callings outside people made about people who have a mentaly handicap(that makes me so angry). Also I would really like to share experience about the care that is given to people who have a mently handicap in your country. This, because since a year I work as a coach in a house where people with a mently handicap live. The organisation strives after, as best as possible, to the independence off mentaly handicaped children/adults. I think that this is a nobel idea, but also thinks that the society expects more from these people than they somethimes can handle. Well, further I want to say that I love my sister and who wil mess with her, will mess with me. If you like to know more about me, my life, the place my sister has in it and my work, I would really like it if you write me a mail, By the way. The e-mail adress is from my parents, so it might take a couple off days before I have got the time to answer. Well, write soon. Natalie Weil. Natalie Weil <motleycrew@databob.nl>
Just wanted to let you know where we are from not USA but from Edmonton, Alberta, Canada. Cheryl Rowbotham <rrowbo@telusplanet.net>
We have a daughter named Kayla with RTS and she is now 5 and doing very well. She is in her last year of early education. We are looking forward to next year in the opportunity program for her at our local school. Kayla's speech is getting better all the time. I would have loved to see a website and e-mail address to respond to when we had Kayla diagnosed 4 years ago. I believe that when you can talk to other families with a child the same it makes a big difference. Looking forward to hearing from anyone about their child. Cheryl Cheryl Rowbotham <rrowbo@telusplanet.net>
We have 5 children, our oldest daughter is 24 year old with R.T.S. She is the sunshine in our live. Saskia Weil <motleycrew@databob.nl>
I'm sorry, but my last e-mail address was wrong. The correct on is: peter.been@worldonline.nl Peter de Been <peter.been@worldonline.nl>
We are a 26 year old father and a 27 year old mother of a child with RTS. Our son Quinten was born on august 10, 1998. He had a very bad start and in december he had to go to the hospital for 3 days, because they thought he had cyctic fibrosis (CF). Because of several infections he stayed in several hospitals for 3 months. During his stay, a docter told us, that he thought he had RTS. A specialist in genetics confirmed this diagnosis. After a couple of weeks in disbelieve, we are trying to live with it. We hope to get support from friends and other people, who understand our pain. Peter de Been <peter_been@worldonline.nl>
I have a neice with RTS who is almost seven years old. She is so speacial to me and has taught me many things. She is a true angel and I love her with all my heart! I have written a poem about her, I would like to share it with you so please put it in with the other poetry. ASHLEY I AM DIFFERENT, NOT WEIRD OR UNHUMAN. I THINK THOUGHTS IN MY HEAD ALTHOUGH I SPEAK NO WORD, FOR I AM AS HELPLESS AS A BABY BIRD. I HAVE A BAD HEART, BUT IT'S AS BIG AS THIS UNIVERSE. PLEASE THINK OF ME AS A BLESSING, NOT AS A CURSE. PEOPLE WILL ALWAYS GAWK AND LOOK AT ME FUNNY, BUT I KNOW I'M WORTH MORE THAN ANY AMOUNT OF MONEY. I CRY WHEN I WANT SOMETHING AND I KNOW IT GETS QUITE IRRATATING, BUT IT'S THE ONLY WAY I KNOW OF COMMUNICATING. FOR ALL THE PEOPLE WHO THINK I'M TOO WEIRD, YOU SHOULD TAKE A TRIP IN MY MIND AND YOU WOULD'NT BE SO SCARED. I'M THE CUTEST LITTLE THING WITH LONG BLACK HAIR, GREEN EYES, RED LIPS AND SKIN SO SOFT AND WHITE AS SNOW, I'M THE GREATEST FRIEND YOU'LL EVER KNOW. PLEASE ACCEPT ME FOR WHO I AM AND BELEIVE IN ME FOR ALL I CAN BE, FOR IF YOU SHOW ME YOU LOVE ME I'LL JUST LET YOU SEE! Kari Jenkins My daughter Jayme, 12, has carried the diagnosis of Rubinstein-Taybi for a few years now. Initially, it was only a diagnosis to me, now it is becoming more of a reality. Yesterday her cardiologist suggested we see the geneticist again, and the reality of her diagnosis really hit home for me, as he obviously is seeing changes in her. I have not been in denial about the diagnosis but I have not informed myself as well as I should have in the beginning. I would like to talk to other's who are living with this reality. L Fisher <lfisher@nponline.net> I always learn something new each time I visit this site. My 3 year old, Clay, hs RTS. He is simply wonderful. I have never seen a more relaxed, easy going child. He is a joy (almost) every minute of the day. He has finally started walking and saying some words. He is in preschool now, and I have seen more progress in 2 months of school than I saw in 2 years of private therapy. If anyone is "on the fence" about public education and the RTS child, email me! I was extremely hesitant...but I am so glad I enrolled him. I am interested in talking with other parents of RTS children who have had children after their RTS child. Good luck! Carla Madison-Whitaker <carmadwhit@hotmail.com>
I have a 36 year old daughter, BJ, with rts. She was one of the first children diagnosed with rts in the USA. Dr. Rubenstein saw her at Henrietta Egelston hospital of Emory University when she was an infant. She was moderately mentally retarded. At the age of 17 she had an anurism and, as a result, suffered severe brain damage and is now profoundly retarded. She is living a nursing home near me so I can visit daily. She has been a most enjoyable and pleasurable child. Linda Anderson <shlaer@stc.net> My daughter Cheryl, lives in Canada and has a beautiful son, Royce Alexander who has been diagnosed with RTS. Royce is 6 months corrected age and has characteristics of RTS. He has undergone extensive testing and is doing very well. I appreciate this site and being able to read about other precious children with RTS and maybe give new insites to my daughter. Thank you, Linda Thomas Linda Thomas <thomasl@the-american-dream.com>
I am an Occupational therapy student at the University of New Mexico. One of our courses is called problem based learning in which the students explore various cases as part of a team. The program is designed to help the students problem solve diagnosis and treatments and teach each other. Your site was most beneficial to my understanding of RTS. Thank you! Annette Garcia <Annette_Garcia@somasf.unm.edu>
I work with people with various disablities. More recently, I have been working with a young man who has RTS. The information on his condition received was limiting. I have found looking and reading the information on these pages both informative and extremely helpful. It will enable me to understand and work even better with this young man who recently came into our care. Thank you for such useful and informative information. David Simons <DSi1502711@aol.com> Sorry for the double post. I forgot my email address the first time. I am an elementary school teacher. We have an RTS student on campus and I wanted to know more about RTS. Our Special Ed. teachers and I place special needs children in my class from time to time. I wanted more information about RTS to see if our RTS student could benefit from placement in my class. We don't have anything currently planned, but I am always open to the possibility. Great site! Randy Kamiya <GSTDRandy@aol.com> I am an elementary school teacher. We have an RTS student on campus and I wanted to know more about RTS. Our Special Ed. teachers and I place special needs children in my class from time to time. I wanted more information about RTS to see if our RTS student could benefit from placement in my class. We don't have anything currently planned, but I am always open to the possibility. Great site! Randy Kamiya <GSTDRandy> My cousin(hi Lisa) has a son with RTS and I was lucky enough to get the chance to see them at Christmas. He is three years old and a constant source of joy to all in his family as he is one of the happiest little kids you could ever know. Dean Campbell <deancamp@hotmail.com> Hi-my name is Maureen. I have three children 9,5, 1. My 1 yr old was born with several anomalies; extra digits on both hands, extra wide soft spot, two blood vessels in her umbilical for instead of three, and more. She has gross motor dev. delay; she is rolling but not crawling yet. We do not have a diagnosis yet but we have been to two diff genetics clinics. I think that our new Dr. will be able to help us. I was introduced to this web page via the NORD website. I searched "polydactyly and dev delay" and received this as one of the hits on the search. I think that she may have RTS - She has extra long thumbs, an ASD heart defect and she is cyanotic due to a vein entering the heart in the wrong direction. We also have orthop concerns and she wears DAFO's to support her feet and legs. Thank you for having such a great webpage to get info! I found out everything I needed to know in one place. I will let you know if we are diagnoised with RTS. Maureen Hannoun - email MAHANNOUN@aol.com Maureen A. Hannoun <MAHANNOUN@aol.com>
Our son Skylar Fetter is 5 years old with RTS. We are interested in any information regarding special needs of children in this age range. Skylar attends regular kindergarten and pre-school. He is about one year delayed in his learning development. Skylar is a delightful member of our family. We can not imagine our lives without him. Larry and Joanna Larry Fetter Our son Skylar Fetter is 5 years old with RTS. We are interested in any information regarding special needs of children in this age range. Skylar attends regular kindergarten and pre-school. He is about one year delayed in his learning development. Larry Fetter Hi, We have a wonderful 5 year old son with RTS. Steven is the happiest most energetic child we know. He loves music of all types, playing the guitar and harmonica. He is curently in Sr. Kindergarden with a full time EA. He knows sign language and is speaking verbally better then anyone ever guessed he would. We would love to chat with anyone interested in knowing more about Steven or RTS. Dave & Andrea Kennedy Dave Kennedy <thekennedyfamily@sprint.ca>
I would like to chat with parents of other children with RTS and join this club Joy Grachen <EandJ168@AOL.com> My cousin delivered a baby in November that was diagnosed with RTS and to find information was a little difficult. I have printed almost the whole web page for her. The baby is doing wonderful at this time and is gorgeous!!! Thanks again for all the information. Lisa Ronglien <ronglien@frontiernet.net>
My son, Lawrence, is 9 years old. He was diagnosed at birth with RTS. He is also legally blind. Lawrence loves music(the Three Tenors, MTV, all kinds of music), he loves Barney and Pee Wee Herman tapes. He is the sunshine of my life. Diane S Cox <dianescox@aol.com> Our son was born with RTS. All we knew at the time was that he had many medical problems, and - as he got older - that he was mentally retarded. "Atypical" was the word that was used to describe him. He had open-heart surgery when he was 2 1/2 years old, at Yale-New haven Hospital in Connecticut. After that, we treated him symptomatically; whatever showed up - we got medical care for! Kief was not diagnosed until he was almost 14 years old - and then it was only because we happened to stumble across a geneticist at Newington Children's Hospital (in Newington, Connecticut) who happened to have worked with Dr. Jack Rub- instein. Until that point, we had no idea what his "problem" was!!!! Kief was in special education classes for his entire school years, and is currently enrolled in a community-based day program for the developmentally disabled called Cole Voca- tional Services. For those of you who are new parents - or parents of older children with RTS - we want to tell you that it's been a VERY LONG THIRTY YEARS!!! That's right, Kief was born in 1969, right around the time that Drs. Taybi and Rubinstein came out with their article!!! There are so many days that you will want to give up, and will wonder if it's all worth it; some days it is, and some days it isn't - but the days it is by far outweigh the other days. Richard put it best when he remarked that it was wonderful that he had an adult son that he could hug, and enjoy a special closeness with that would never go away. Kief has brought many special people into our lives - along along with many that weren't, but we are among a very elite group of "over 50" people who are still into Sesame Street, Barney, and TOYS for Christmas!! Just remember, the "child" in these kids lives on - always! Richard & Bridget Morck <AppyCrazy@SprintMail.com>
This site is realy good and i hope it gets better. I was woundering if there are any other siblings out there. Im 14 years old and my brother Eric is 22 and he has rts. If any siblings read this please e-mail me if u want to talk. beth <mailto:rtllc@prodigy.net%20or%20k2_girl_14@hotmail.com> My nephew was diagnosed at birth with RTS. My sister Alicia set out to find out all she could about RTS to make sure her son would lead as normal a life as she could give him. Her tenacity has paid off. Alicia along with the help of many special people are starting a nutritional study for RTS children. Alicia has been a inspiration to our family. God Bless all those who are helping to better the lives of the children with RTS. Christine Masters <christine.masters@metrokc.gov>
Thank you very much for maintaining this wonderful site! I read "Andy" tonight and it brought tears to my eyes. I'm writing stories for "normal" children abour our terrific "special" kids, but haven't found anyone to illustrate them yet. My grandson, Christopher, is almost nine now and is still the absolute delight of my life. I believe we need to educate the very young children to accept our kids and treat them like any other kid. Does anyone know an illustrator, willing to donate their talents to a project such as this? Keep up the good work!!! Brenda LaPointe <BLaPOINTE@prodigy.net>
A very infromative website. My regards to Nancy and her family. I hope she's still doing well at school. Penny Whalley <penwhalley@hotmail.com>
Our grandson is going through the testing to determine if he has RTS. The medical "mumble jumble" and emotional highs and lows seem overpowering at times. Being able to view your site and read about the syndrome, especially the pages of others who have been in this situation is both helpful and encouraging. THANK YOU!!! Carol Beck <thebex@swbell.net> Hi, Enjoyed reading about Joey. Our grandfather/great- grandfather was Homer Woodburn, Edna's brother. Suzanne & Jenny Likins <suno64@aol.com>
I'm a School Psychologist who is in the process of evaluating a student new to our system. He is 7 and has RTS. I would be interested in knowing more about the educational needs of these children. Carol Gardner <cagardner@hotmail.come>
Looks very professional and was very informative to me. Barbara Shelton <Andyberto@aol.com> There is so little information on RTS. This website is a godsend to families of RTS children. We have received so much help and inspiration from reading the stories of other families facing these same challenges. Thank you! ~Susan <susan6@bigfoot.com> Thank you once again for all the work you have done and continue to do on this website. Thank you too to all the families that have shared their stories on "Our Pages". I visited everyone again today and it was like visiting friends. ~Joy Andersen <andersen@ihug.co.nz>
Sou pai de Victor Hugo Pires Alves com 14 anos de idade, portador da sindrome Rubinstein-Taybi, gostaria de poder estar trocando experiencias com outros pais a respeito. Thanks in Advance Abel Wagner Alves <abel.alves@uol.com.br>
tODAY I HAD A PATIENT APPEAR AT MY CHIROPODY (PODIATRY) CLINIC WITH STS AND I HAD NEVER HEARD OF IT. I APPROACHED OTHER HEALTHCARE PROFESSIONALS WHO ALSO HAD NO KNOWLEDGE OF THE SYNDROM. HOWEVER AFTER FINDING YOUR WEB SITE I AM NOW ABLE TO ADVISE MY PATIENT. KEEP UP THE GOOD WORK IAN STEEL ian steel <ianstl@yahoo.com> The RTS E-MAILING LIST is a family-to-family discussion group via email, devoted to providing information and support concerning all aspects of Rubinstein-Taybi syndrome. For more information, please click on the link or contact Janet Estes (List Administrator). ***P.S. Diane, thanks so much for helping people know they don't have to feel isolated!*** Janet Estes <zestes@sd69.bc.ca>
Keep up the excellent work Diane! You have done a tremendous job. Thank you for all your hard work! Lisa McRorie |