2002-2003

Guestbook

A site devoted to the families and people diagnosed with Rubinstein-Taybi Syndrome.

Guestbook entries from November 2000 until March 2002

Kathleen Hunton

grannykat@eatel.net

Independence, La.|USA|

I would like to thank all who has come to our need in a time of emotional distress when my granddaughter Trinity was born 3 1/2mos ago. Since then we have had the most wonderful people give us the strength and knowledge of what we were facing and the most compassionate freindships that anyone could ask for. I want to thank all of you who have been there when we need a shoulder to cry on or just someone to talk to. You are our pillar to lean on. When someone has questions about RTS, I just send them to this website for them to read and then they will get an understanding of our special little angels.

Virginia McFarren

ginbabe56@aol.com

Billings|MT|USA

When our grandson Adrian was born, our son and daughter-in-law found what they need with this web site. It has giving them valuable information to pass on to their doctors. It has giving them great support from all involved too. Our little angel is so special to all of us. Thank you all for the help and support they so much needed. They are also there to help others too now.

Anthony / Lisa Willem

willems1@msn.com

Midwest city|okahoma|USA|

Brianna has RTS and is now 10 months. I find the information in the site very useful and I want to thank you for sharing all you know about RTS with parents like us.

K Rohrer

krohrer@jacobsmarketing.com

Dayton|MN|USA

My grandson, Jesse was born with RTS. It was a devasting day for us. I thought how could such a beautiful child have anything wrong with him. This was my first grandbaby, and my son's first child. But now I look at this beautiful, loving child and just think of him as my grandson, not my grandchild with a disability. I think this sight and many emails with Chris Garvente for helping me to understand about RTS. It is not easy for my grandson's parents, raising a differently abled child, going to school full time and working full time, but they are doing a beautiful job with Jesse. Jesse's mom has so much patience considering that my son is not around (what with school and working)to help much, but on the weekends they pack alot of living into their special times together. Jesse is fairly healthy. He has surgery for a leg that would not straighten out, and on one of his thumbs. He continues to have problems with swallowing and keeping his food down. He is beginning to chatter a little, and understands words. He is very active and such a loving little guy. I am very happy that he is my grandson. My son once said that he thought Jesse was a blessing and would do something very special in his life, and I believe him.

Katrina Easley

katrinaeasley@earthlink.net

Virginia|Gladys|

I have a daughter name Kiarra. And she has RTS. She is a blessing from God.I would like to thank the parents who shared their stories on the RTS website. I have enjoyed looking at all the special children with this syndrome. The RTS website shows that everybody is somebody in the eye sight of God.Because if it hadn't not been for God standing by us through Kiarra sickness,I don't know where I would be. But they say that God do not put nomore on you than you can bare.Thanks again for the website.That let families like us know that we are not alone. Thanks!

Vince

vince@rts-support.co.uk

http://rts-support.co.uk

Gloucester||England

Merry Christmas from the RTS support group in the UK. Please visit my small site to read about my son and other topics regarding RTS. Have a happy new year ,thinking of you all. Vince

Adele Meusel

realtors@netactive.co.za

Port Elizabeth|Eastern Cape|South Africa

Hello to all and special good wishes for the New Year. We are parents of an 18 year old daughter, Melissa, who was diagnosed in 1985 as having Rubenstein Taybi Syndrome. So far we have only had contact with two other families in South Africa and would love to meet more if possible. Please email us direct if you wish The site has been of immense help to us with our queries on this syndrome and the people on the list have become good friends to our family.

Patricia Berlin

princessp123@yahoo.com

Wilmette|IL|USA

I am a high school freshmen student who just completed a project about RTS. I just wanted to tell all of the parents out there that you are all amazing people. Having read all of the stories about RTS I could find, I wanted to tell you that I envy our strength. Keep it up!

Susan Cregg

sweetsue92@aol.com

Pelham|N.H.|United States

Hi my son's name is Christopher,he was born 5-30-94 which makes him six years old.From the day chris was born there was always questions about his features. example wide set eyes,thick eyelashes,broad thumbs,& great toes.As Chris got older we realized he also had many developmental delays.Well after numerous Dr.'s Appt.'s & several specialist Chris was finally sent to a Genetisist who made the diagnosis of RTS.In a way it was a relief to have something to go on.From reading many of your pages i see as the Dr. specified Chris is very very low on the Spectrum of the Syndrome but my heart does go out to each and every one of you.I have never had the opportunity to speak to anyone who has a child with RTS I would love to speak to someone. Thank you,Susan Cregg

|Judy Prewitt

tiggerjp78@yahoo.com

Salida|CO|USA

My daughter Roxanne is 12 years old. She was diagnosed with RTS at 8 months old. I cannot begin to express what a joy this child has been to us. God has given her the most beautiful personality. She has touched so many lives. We are still learning about RTS, it seems the older Roxanne gets, the more we need to know. She was a very easy baby, except for the boughts of sickness. She would always get everything twice as bad as every one else. To this day she is very easy to entertain, she does this herself. She loves music & movies and memorizes them very quickly. She still would rather play beside other children rather than with them. She attends public school; this is where living in a small town helps, I think. Most of the kids know her and accept her for who she is. I would love for other parents to contact me and share. If you feel the same way we do, you just can't help but love these very special little people. Life is so simple in their eyes. Judy Prewitt

|Joyce Donnellan

joycedonnellan@ozemail.com.au

Adelaide|SA|Australia

Gabrielle is now 6yrs old and the delight of our family. She came to live with us at 6 weeks of age when she was released from hospital. There have been many ups and downs with various operations and medical problems but she has brought so much joy and pleasure to us. We are hoping to start a support group in Australia for both parents with newly diagnosed children and those who have years of experience to contribute. So feel free to email me to discuss the possibilities. I "lurk" around the support group list each day and am guilty of not contributing very often. Let me say how much I have appreciated the input of those of you who share your lives/joys/sorrows with the rest of us. It enables us to learn new things to try and also gives us a clearer picture of where Gabrielle fits in this RTS family. I feel like all of you are part of my family and having you there if I ever need you is part of the wonder of being an RTS parent.

mary

seedox@yahoo.co.uk

london|uk|england

my daughter had a breakdown after several months. not knowing what rts was. gps doctors all said wait and see.so not getting any infomation on rts was terible thank god for youe loverly letters. its not all roses but she is now trying to come to terms thanks to your letters of encourage ment.gratefull nan

Fabio Peloso

fabiopeloso@yahoo.com

http://www.geocities.com/fabiopeloso

Switzerland

I've got a friends with a RTS's girl and i want to know about it. Thanks!

ruth

ruthhope785@aol.com

torrington|CT|USA

hi, im so glad to have found this sight. i do not have a child with RTS, i have a brother with RTS and although he is now 33 yrs old i am just recently learning that this is what he has and do not have anyone to talk to about it and do not no how to get help or what if anything can be done. My brother is an amazing person, very smart! and has a memory like an elephant, he has a great sense of humor and loves everyone.

Stacie

mzstacie420@aol.com

Noblesville|IN|USA

|I am glad that I have found this site. I am 17 years old and I have an RTS sister, Shandi, and it is always nice to learn new things about her.

MaryAlice Contreras

mary.contreras@st.com

Irving|TX|USA

Christian's Grandma: I am so privilaged to have an only grandchild, Christian. Christian was born with RTS and is now nine years old. He has shown our entire, very large family the meaning of unconditional love and happiness. He continues to teach us what is important in life.

Jackie Horton

jackie@shockware.com

Canada

I am the auntie of two very special 1 year old twin boys with RTS. Nick and Jake are amazing kids. They have overcome many obstacles so far, and done this with flying colors. They are always so happy. They have a smile and a giggle for everyone!! They are truly a blessing for this family, it's like we chose them ourselves. Love ya Nick and Jake Auntie Jackie

Carol Patey

rvgypsie@hotmail.com

Raymond|NH|United States

I am the grandmother of eight month old Jamy Jordan. What a special angel this family has been blessed with. RTS is new to our world and for my daughter Deborahlynn, this is very scary. She is a trouper though and would like to reach out to other parents who have some experience in raising children with RTS. Thank you and God bless. Carol Patey

Sandy Lash

slash6838@aol.com

corpus christi|texas|usa

I am the mother of a child with RTS,Mikey is a fraternal twin and is 5yrs old now,when he was diagnosed with RTS I thought that it was just something that would go away,I was not sure of what RTS was,I am still learning everyday about this syndrome,I love my son,he has brought so much joy into my life,his twin sister Paige is 5 hours younger then him and thinks that she is his mother,she protects him when they are in school.I could not see my child any other way,I love him so much.

Amanda

mick_and_amanda@rtsuk.freeserve.co.uk

Northampton.||UK

Hi, Found your site at last, some lovely photos. Maddie, age 12 (RTS) is my eldest of 3 children, a younger brother & sister, only in age, not attitude. Maddie has brought us worry, grief at times, smiles, laughter, frustration, every emotion you could imagine. She is a delight to everyone who ever comes across her. Once met, she is never forgotten by them. She said to me today, “Thanks Mum, It's very kind of you, but I don't want any more clean clothes to put away, I've had enough of that”;!!!! Kind regards to you all, for all the info, updates, reassurances. Amanda

Bethany

mister52099@aol.com

Whiteman AFB|Missouri|USA

Hi I have a ton of questions about rts. My son has possibly been diagnosed with rts. We don't know what is in store for us but all I know is that I love my son to death and I would not trade him for the world. I just need some help understanding this some more with people that are going through or have been through what we have been through so that I may help my son and my husband and I through some of this.

Bobbi Irish

denbob@netins.net

Farmersburg|Iowa|usa

Hi, I am the mother of Christopher 14(rts) he is a wonderful little man. When chris was first diagnosed it was pretty devastating but he has grown after alot of surgery's into a very healthy boy. I have had in in schooling or therapy since he was 3 months old, he now is in the 6th grade in a self contained program. I would like to find or recieve some input on a few things that I have recently come up with as he grows older ie: still not potty trained,constipation, behavior ect... he is growing older and I guess this is just the time that I am stumpped on a few things. thanks, Bobbi

Krysten Moon

kmoon@peru.k12.in.us

Peru|Indiana|USA

Hi! We are FINALLY the parents of our 18-year-old foster daughter, Angel. She was diagnosed with RTS in the mid 80's, and is deaf, plus other issues... growth hormone deficiency, heart surgery, fighting with school systems... if you need someone to correspond with, I promise we've done the potty training thing, the fight with the school board thing, the inform your church that your kid is still a person thing... We'd love to hear from you and pray for you. We are BIG believers in God and the amazing power of prayer. Ooo... and we're about to do the scoliosis thing! (Probably surgery this summer for a 52% curve). If you have any advice, let us know!

gail

cgail_craig@hotmail.com

belfast||northern ireland

|hi i am a mum of a child with RTS her name is samantha and she is 2 years old. she is a great kid always cheers me up when im feeling down. we have had some hard times with her going in and out of hospital but things are looking up now. the only one thing that gets samantha down is her constipation the doctors have tryed her with some stuff but it just dosnt help. im just wanting to know if any one has any advice on this i would be very greatful cause i hate whaching her go trough this. thank you

Deanne

deebialy@msn.com

Waterford|MI|USA

Hi! My daugter is now 22mo. she was diagnosed with rts 1 mon.ago. We are very interested in talking with other parents to gain any information or support. We are particulary interested in finding out about sign language as a form of non-verbal communication. This is all new to us, we would appreciate any info. Our daugher is such a blessing to us. Thank you and God bless. Deedee

Katie

ktmax@frontiernet.net

Rochester|New York|USA

Hi! My sister Roseanne is 35 years old and is diagnosed with RTS. Our parents are deceased and I am her guardian. My sister has been the best teacher and influence in my families life. She has touched so many people, family and friends. Roseanne is our teacher. She thrives on being loved and giving love. She is the light in my life. Roseanne was born 35 years ago at 2lbs. and went down to 1.9 lbs ... very tiny. She faught very hard to live. The doctors let my parents bring her home when she was only 4 lbs. They told us her chances of survival were very limited. Roseanne is 35 years old. Although she is frail, she has done very well. Roseanne has some problems relating to her vision, she has mental retardation, thyroid problems,dental problems, muscle and bone problems in the feet and knees. Roseanne does not speak but uses sign language. Roseanne has recently been diagnosed with the starts of diabetes, but is being controlled nutritionally. My sister is a yourng woman with great determination and courage. She is quick with a laugh, loves music, dogs and cats. She loves pushing buttons, keys and things that make funny noises. Roseanne loves to watch a good football game and gets excited when there is a touchdown! She is amazing & we love our sister.

Ruth Lowell

ruthom45@aol.com

Lakeland|Florida|USA

I am Mom to Christopher, who is now 20 years old and was diagnosed at age three with no information other than two pages from a medical book that the drs. gave us at the time. Well I am pleased and thrilled to say that he has come a very long way since then and the doctors that told us to “put him in a comfortable place” because he would not be able to do anything for himself should see him now!!!! He is doing so many wonderful things and he talks a mile a minute, although he didn't start to talk until he was five years old. He loves music, dancing, Disney videos, and bowling and has earned numerous awards on his bowling league. There have been many many rough spots over the years, and as I look back I wonder how we made it this far, but our faith has helped and so have a lot of wonderful friends and family along the way. The most wonderful thing I have found was when I found the RTS list for parents a couple of years ago and all the terrific people we have met there. I would be happy to talk to anyone who has questions or just needs to talk on a bad day. Believe me I have had more than my share and had wished I had had a group of wonderful people like I now share with at the time when things weren't so good. Take heart things do get better. Just remember when you feel as though you just can't do it any more take it day by day; and when that gets too tough; take it moment by moment and don't worry about tomorrow deal with the moment and deal with tomorrow when it comes. I hope to get to know many more of you wonderful parents and family members of our terrific kids.Email me anytime.

Rachel Smith

jamheraccess@hotmail.com

cheshire||England

I have a 17 yr old sister with RTS. We would like to find out more about others who suffers with there “time of the month”; and any help or tips they have.We heard that depo injection(pill injection) can help but our Dr is reluctant to do this.Any advice would be helpful.Contact me at above email address many thanks .....R Smith p.s. it is very true the comments i have heard said about people with RTS, that they always have a loving smile for people they know....this i know is very true :-)

Katelyn

kt_234@hotmail.com

Coos Bay|Or|USA

About 4 years ago my cousins Drs. said he had RTS. Now they say he has Angelmans Syndrome. I am doing a speech in health about RTS. If you have any information or stories that can help me please let me know. I have until next Monday to find information. Thanks.

Robin Snopik, PT

rnrsnopik@hotmail.com

Marion|OH

I am a school-based physical therapist who was asked to evaluate a child with RTS. This was my first encounter and I thought I would research a little. I am very impressed with this site. IT IS ALL POSITIVE! I will refer the family to you for information and not feel they will be overwhelmed by medical jargon and negative thinking. Thank you!

Laura Cole

timmy94lc@yahoo.com

Traverse City|Michigan|United States

Hello my name is Laura Cole and I have RTS. I was diagnosed along with my son about 6 years ago(August of 1995). Im 34 years old now and live in Traverse City, Michigan. Unfortunetly my son, Timmy, lost his battle about 2 months prior to being diagnosed. I've been keeping up with the RTS homepage since its coming out in the spring of 1996. I logged onto our e-mail listserve about 6 months ago for the first time. It's been great to say the least. I've learned more about RTS than I ever could have imagined. My RTS extended family has been great with me in allowing me to share my sons' and my experiences with RTS. It's definetly helped in my healing process in accepting my sons' death and also with the diagnosis itself. My family and I have been so greatful in finally knowing some of the answers to questions that we have had for along time. Thanks to U-M hospitals(C.S. Motts childrens hospital)in Ann Arbor, Michigan and my extended RTS family its all been possible.

Silke Allard

silke.mike@home.com

Victoria British C||Canada

Hello, I am a Residential support worker in a group home .I was looking for more info to help the people I support in this field. This web sight is awesome and will recommend it to others. Please fell free to email me. I so love my job and am very greatful I have the gift for this type of career. God Bless all or you !!!

Sean Duggan

forestninja@wolf-web.com

http://i.am/forestninja

Toronto|Ontario|Canada

Hi all. Love the site. Just wanted to say that my sister Rhonda has RTS. She was born Nov 20, 1967 and is 37 years old and from what I've seen, seems to be the oldest person I've seen with RTS so far. My parents have run the gauntlet with situations any if they or I can offer any advice to young parents out there, please feel more that free to email me and ask. My folks would have loved a forum like this to just to know there was someone else out there who was experiencing the same things.

Rachel Jewell

jewelltribe@yahoo.com

Nebraska City|Ne|USA

Hello, my daughter was born on Nov. 10 1999. She has had a lot of health problems since she was born. They first diagnosed her with cerebral palsy and in Nov. of 2000 they have also added RTS to her diagnosis. It has been nice to have this website to come to and read about other kids and families like our daughter I definately need alot of information to feel comfortable but this has helped. It is definatly a hard thing to accept. I would greatly accept any advice or support anyone would like to lend.

Bernd Thaler

bernd.thaler@power.alstom.com

Stuttgart|BW|Germany

Hello We have a 1 year old daughter KAREN who is probably RTS diagnosed. First of all thank you very much for this very helpful page. Karen has broad thumbs (a bit inclined), broad first toes, a broad flat nose, and a lot of very nice hair. She is compared to our two sons, Philip (6 1/2) and Leon (3) more developed in crawling and other reactions like imitation of speech. It seems to be strange for us, that Karen might be mentality delayed. We try to get now a gen test for verification. Now we have following question: Several cranial bones of Karen's skull are fixed together. The coronal sutures at both sides and the front suture is already closed. The anterior fontanel is large and the edges are arched exterior. (Since the beginning of her live she has had a fontanel arched exterior) Our doctor decided now to cut the coronal sutures as soon as possible. Do anybody know any similar case? Are there any difficulties or danger in relation to RTS? Thank you very much Bernd Thaler, Stuttgart/Germany

valerie cordes

vkcordes@aol.com

Chicago|IL|USA

My daughter may have a very mild case of RTS. She has had many tests and it is suspected by geneticists. She is 5 yrs.old., small in size and has had gross motor delays since birth, and some physical traits. Speech and cognitive seems unaffected. Does anyone out there know of any other mild cases of RTS? What is prognosis? Can other symptoms develop? Would appreciate any comments.

Christopher Michael Gebhardt

f15maverick@excite.com

Montgomery|Texas|USA

Hello My name is Christopher Michael Gebhardt, I'm a 22 yr old male -I live in Montgomery, Texas, I'm engaged to be married next june and i was diagnosed with Rubenstien-Tabi Syndrome when i was about 3 1/2 yrs old and i'm now 22 yrs old and i have been able to do most of the things that the doctors said that i would never be able to do, infact i have my own vehicle and i drive, i sing, I just completed a 9 month course at Texas Bible Institute in Columbus and so saying all that i am a RTS success case. Please give me a call-My number is (936)-(449-6977) or drop me a line at F15Maverick@excite.com-Thanks ! Christopher Gebhardt

Sheri Hooker

sheri@wavez.org

Plano|Texas|USA

I am the mother of Jonathan age 3 born April 1998 and Andrew (rts) born July 14, 2001. He is still in the nicu and has just had a g tube and a nissen done today. He has extremely bad reflux. He weighed 6lbs 8 oz. when born and has just regained his weight back up to 6lbs 9 oz. before surgery. He had been on a respirator and had been weened off any oxygen two weeks later. He is on very little oxygen this evening and hopefully will remeain off. If anyone wants to contact me please feel free. I am just now coming to grips with having a hild that will be labeled handicapped. I have received much support from my family and our little Andrew is already working miracles within our faimilies. He had brought my sister closer to me which I had been trying to do for 25 years. He is also strengthening my relationship with my husband as well as bringing many of our family members together again. He did all of this within the first 4 days of his life. I can only imagine what god has in store for us in the years to come. I've always heard that God works in mysterious ways. I can see this with our precious son already.

David

dvdlmbrt@msn.com

I just found out today a daughter of very dear friends of mine appears to have RTS. I had never heard of RTS and went directly to the internent. This page offers stories of hope and comfort and is a treasure for anyone who has become aware of RTS. Thank you for the folks who have devoted themselves to making this page possible. I can imagine it is a very scary thing to hear that your child has been diagnosed with something so rare. It is great that there is a place that you can go to learn more about RTS and read the experiences of people who have RTS and their families. Good luck to all

Karen Hilton Staker

staker9@juno.com

Newdale|Idaho|USA

Hello, I am so grateful to find this site. I am 52 years old and my sister, Barbara, was born on August 31st, 1952. She will celebrate her 49th birthday this year. Her abnormalities were an amazingly difficult thing for my mother. Barbara was the fifth child in our family and the other four children had been born normal. Mother could not accept that her baby was imperfect. The Doctors didn't know exactly what was wrong, so they simply told my mother that “something” was wrong with her baby. Mother struggled for years to accept Barbara. I was very small when Barbara was born and the youngest in the family. It, apparently, was very traumatic for me to have this new sister in our home with my Mother acting so stressed and strained. I grew up hating my sister and resenting her and wishing she would die. I was embarrassed of her and would lock her in her bedroom when my friends would come. I just didn't know what to do about her in my life! I think I was reflecting the feelings that our mother had. It was very, very difficult for Mom to have such a child in such an unenlightened age. For years, I was told she had cerebral palsy. It was a LONG time, years, before she was properly diagnosed with Rubinstein-Taybi Syndrome. Barbara lives today in a care center, where she receives excellent care. Our parents have both long ago passed away. Our brother lives nearby Barbara's care center and takes an active and interested part in her life and care, as do I. I hope my sister has forgiven me for how I treated her. I adore her now - but it came over a period of years, as I matured, and began to understand the truth of her “condition” Thanks for listening - Karen Staker

Christopher M. Gebhardt

mhsbear@hotmail.com

Montgomery|Tx|USA

Hello, I'm Chris Gebhardt, I just thought that I would give yall an update on what's going on in my life-I'm about to be an ordained minister, my father and i are starting a ministry called High Hope Ministries-and we'll be ministering to people who have rts and to parents of children who have rts and we are also opening a group home for handicapped young adults who are somewhat handicapped, but self functioning but need supervision and we will have space for 5 people only until we feel the need to expnd so give us a call if you know of someone in texas who needs to be in a group home out in the country with beautiful surroundings-you can contact us at 936-449-6977 or e-mail at mhsbear@hotmail.com-ask for mike or chris !

Donna Veres

donna.veres@marconi.com

Novelty|OH|USA

My 5-year-old granddaughter, Sophia, has Rubenstein-Taybi. She is the love of my life, and my concerns are not so much for her as for my daughter, who has been distraught ever since Sophia's birth. She will not even read about the syndrome, much less join a support group. She refuses to read any articles I print from the web pages. She has had one nervous breakdown and is on the verge of another. Sophia is beginning to talk, putting two words together. She uses sign language and walked at 18 months. I feel she is quite intelligent -- she knows how to use to VCR, which is more than I can say about myself. How can I help my daughter-- I will say she spends nearly every waking minute teaching Sophia. Presently she cries and cries and is afraid that Sophia will die of cancer. Can anyone tell me if there is a relationship between Rubenstein-Taybi and cancer? This is very important to me right now. Thank you and God bless you. Donna Veres

Carla LeBoeuf

carlaleboeuf@hotmail.com

Lake Charles|LA|USA

Hello to everyone! I am reading the recent posts to the guestbook, and I'd like to let every new parent to the site know that there is an awesome resource waiting for you...the RTS email group. I wish I had known about it when Clay (5 1/2, RTS) was born. Best wishes to all, and please consider the list. You'll get more practical advice than you'll ever get from the BEST doctors (and I have the best pediatrician in the world!!!!!!!1)

Kym-Maree Sargaison

michael@eis.net.au

Brisbane|Qld|Australia

Just a small note to say hi to all. My daughter meg is eight years old and has RTS, Some how I really dont think I would change her, Never in my thirty seven years of life has one single person made me feel inspired wanted and so happy every time i think of them. Yes she has learning difficulty, she does not say much but this girl just never gives up!For some one that started life with tender hooks she has just taken the bull by the horns and gone for it. I will write in again when I have more time (something i can never get enough of) Kym-Maree

Kathleen Hunton

mawkat@bellsouth.net

Independence|La.|USA

My granddaughter Trinity (13mos) was diagnosed 1 day after birth with RTS and I want everyone to know how wonderful and informative this site is for parents ,grandparents and sibling to learn more about RTS. Everyone that I have come in contact with has been so very helpful to us and has taught us a lot about this syndrome. Thank ya'll very much for being there for us when we need or don't need.

Danielle Cox

candicox18@aol.com

Buffalo|NY|USA

Hi, My name is Danielle. My little brother Lawrence is 12 years old and has RTS. Lawrence lives in Queens and I go to school in Buffalo. I would really like to get to know other families and children who are just like my brother. It was the best feeling to attend the Cincinnati conference-where I was reminded that we are not alone. Please feel free to contact me!

Carole Kennedy Kitchens

ckitchens1@aol.com

Daytona Beach|Florida|USA

My youngest sister, Helen, was 53 years old July 4th and has been the rallying point for our family for all our lives. We've never met another person who has this syndrome and it's fascinating to read the profiles of the medical problems and personalities of others with RTS since they so closely follow our experiences. Helen spent many years in a wonderful institutional setting at Whitten Center in Clinton, SC, but is now being cared for at home by our Mother due to worsening health problems and fundamental changes in care for the mentally handicapped in our state. Residential group homes were mandated for almost all clients and our sister was not being given the health care she required in this setting. Helen is the warmest, most loving and upbeat person I've ever met..she personifies the great self-esteem, love for others and positive attitude that we “normal” people constantly strive for. We are fortunate to have her with us still and treasure each day and each new skill she continues to develop.

Ron Sherfy

red-wings@charter-il.com

Granite City|IL|USA

Our son will turn 11years old on Oct. 13, and he has just been diagnosed with RTS. Since birth he has had so many health problems, and doctors ran , what seems like every test there is to run. But did not know what was wrong. It took them almost 11 years but someone finally, was able to tell us what was going on. Poor little guy has been through more than most people go through in a lifetime. As I read some of the comments in here, I realize that we are not alone, with the stress and pain. I dont know much about RTS, mainly because until last week I never heard of it. but I am going to learn about it. My wife is the one who took our son to the doctor last week and when the doc told her of all the symtoms of RTS, her jaw dropped, because he was discribing our son, Vincent.

Thank You Ron

Feel free to drop us a line , so maybe we can find out more about RTS

Raymond & Audrey Mann

ray_mann@totalise.net

bolton|lancashire|uk

We have a 13 yr old boy, Thomas, who was diagnosed with RTS at 18 months old. Thomas has had problems associated with RTS children eg undescended testes, only one kidney, no tear ducts(hopefully a recent operation should solve this)etc. Thomas's latest problems are: 1-he as put on a tremendous amount of weight in the last 18 months or so, despite diet/exercise etc 2-he has recently started to have bad breath 3-he appears to be stooping quite significantly and is being investigated for possible Scheurmann's disease We would like to hear from anyone out there who has experienced any similar problems particularly 1&2 which could well be related to onset of puberty kind regards Ray & Audrey Mann

Dianne Linton

jonandi@optusnet.com.au

Brisbane|Qld|Australia

We have an 18 year old son Matthew who was diagnosed at birth with RTS. He went through all the usual operations and procedures during his young life and we thought we were over most of it, until he hit around 15 and developed osteoporosis and scoliosis. He has responded well to medication and a spinal brace (we hope) - he is to have further xrays in a few weeks to see how the brace worked. He is a lovely social chatty boy who loves music, jokes and WATCHING sport, movies, videos etc.

Helen Williams

helen.williams@lineone.net

Bristol|outh Gloucestershi|England

Thank you for such an excellent website! I am a Portage Worker in England working with a child with RTS and knew very little about the condition until I found your site. His parents will be delighted with the information I am now able to pass on to them.Thank you once again.

Keith Bolton

092keith@chiron.wits.ac.za

Johannesburg|Gauteng|South Africa

I am a paediatrician in a teaching hospital and hope that you dont mind that I have availed myself of the fantastic site you have set-up. By browsing through the picture gallery one cannot help but marvel at what a great bunch of parents your “RTS” kids have chosen ! Identifying very young babies with RTS is difficult for those of us who see very few children with the problem and sharing their pictures helps me to get a better perspective. At times I feel quite guilty using sites like this and would welcome parents views on this. The child that prompted this visit is a 5 month old with lots of facial features of RTS but without the broad toes and thumbs. Alas, this little girl has AIDS and pneumonia and even RTS fades into the background. Keep up your good work.

Deboralynn Jordan

mummadee1@aol.com

Derry|NH|USA

Hi! I'm a 20 year old mother of 2. My oldest is Jamyson, he's 15 months. He was diagnosed with RTS several months ago. We're handeling well but know that others need some help. I'm always available to chat. Jamy has just about every common feature of RTS and he also has Spina bifida. He's my angel! But aren't they all?

Matt Patereau

mjp@quiknet.com

Sacramento|CA|USA!!!!

Hi everyone. I am the uncle of an RTS child. My niece's name is Kristin and she is 11 years old. My contact with her is very limited due to the distance between us. I think about her on a daily basis and this prompted me to check out this wonderful website. This site is a breath of fresh air! I enjoy reading about all of the children & their families. I am sure that I speak for all of you when I say how special these children are. I love to see the look of joy on Kristin's face every time I see her! She has the best personality and a great sense of humor, even at 11! She loves to watch TV and I enjoy watching cartoons with her. She is one of the greatest loves in my life and I cherish her dearly. I consider myself very lucky to be a part of her life! I LOVE YOU KRISTIN!

SUSAN H FOLLEY

lily48@mediaone.com

EAST KINGSTON|NH|USA

I am a school nurse in USA working with a child with RTS Does anyone have any articles or reference material that they could suggest? Thanks

Louise

reendonegan@eircom.net

IRELAND

Greetings from Ireland. We are a new family to Rubinstein-taybi syndrome. Our daughter was diagnosed a few days ago (although she is now almost 8 years old.) We would love to make contact with others who live in Ireland, and also any teachers out there who may have developed any special techniques or programme plans for children with mild RTS.

Gary and Jocelynn Helmbrecht

ghelmb@msn.com

Sioux Falls|SD|USA

We just found out yesterday that our second son (3 week old Wesley) has RTS. This is without question the most devistating and emotionally unsettling event of our lives. I am a perinatologist. It is my buisness to identify babies with problems prior to birth and counsel parents about the consequences. I never, ever thought I would be affected with a "less than perfect child". I am finding out that it is very difficult to practice what I preach. It is especially hard on my wife. We both find ourselve sobbing uncontrollably. I don't know what to do. Wesely will need surgery for hypospadius, cleft palate, and hand and foot deformeties. The physical problems are less of a concern than his cognitive potential. I want him to have a normal life. At this point, the mountian seem too steep to climb. I know we will get through this and Wesley will receive the best possible care. I look at him differently now and that has to stop. He is still and will always be my son - no matter what the issues are.

Heidi Namken

hnamken@yahoo.com

Sioux Falls|SD|USA

My niece and her husband just found out their 14 m.o. son has RTS. They have two older “healthy” daughters under the age of 5. This family has been through much but to have a diagnosis is such a relief. I feel for those families that didn't have the diagnosis until much much later in their childs life. Keep this fantastic site going! My prayers and strength go out to all people touched by this disease.

Kiki Lapp

kiki@dx9.net

rockford|IL|USA

My husband and I have an 18 month old son named Matthew. He was diaganosed with RTS right after birth, because of his broad and angulated thumbs and great toe. He spent 3 weeks in NICU and it wasn't easy when he came home. Our biggest struggle was getting him to eat. I would cry everyday. He's just starting to eat well and now he weighs 19lbs. Matthew is the happiest little guy. He brings us so much joy. I wouldn't trade him for anything. It's been hard on us especially since it's such a rare syndrome. Jan.24th we will be going through our first surgery with him. I am nervous and hate the idea of putting him to sleep. I would love to here from anyone. It feels so good to write.

Kiki Lapp

kiki@dx9.net

rockford|IL|USA

Lisa

lbooth@leectysch.com

VA|USA

|Thanks so much for this website. I am so blessed to teach a student with RTS. This student has been the highlight of my teaching career. This syndrome was unfamiliar to me. This site helped me to have a better understanding of RTS. I would love to locate other teachers of RTS students and share successful activities and ideas.

Kendra Montgomery

bitesize1966@aol.com

West Portsmouth|Ohio|USA

My son has R.T.S he is 16 years old, his name is Andrew and he is a real joy!! He has had many medical problems,eye surgery undescended testes surgery,tethered spinal cord surgery,wore bi-lateral braces and corrective shoes,has bladder reflux, chronic constipation,has scoliosis and kyphosis.He has to be catherized 2 times a day for the bladder reflux it used to be 4 times,he takes daily medication for bladder and for bowel disorder.Andrew has all the characteristics of the syndrome.He didn't walk until he was 2 and a half years.But Andrew is the most pleasant young man!! He's very sweet,humorous and just a joy to be around!!Andrew's favorite activities are videos of which he memorizes quickly and watches often,reading books,playing video games,computer,singing,listening to music,bowling and driving his golf cart around the yard.He also likes animals and enjoys playing with his dog.Andrew never meets a stranger,he's very friendly and personable.Through all of his medical problems over the years he remains a happy person.I am so happy to have him as my son!! When he was diagnosed at 18 months I like so many others felt scared and devastated but I learned very quickly just how precious he is.Andrew has taught me alot.At birth he was very sick,born with low blood platelets(only 10,000)and couldn't nurse a bottle right away,had such feeding difficulties,chronic constipation.For 11 years the only information I had on R.T.S was 2 papers the Genetic Dr.who diagnosed him gave me,she was helpful and and I never doubted he had RTS because he looked exactly like the baby in the medical book the Dr.showed me and he had all the physical characteristics.I got him into therapy right away speech,OT,PT.I just love Andrew so much and get so excited to hear of other RTS children.I got to go to the conference on RTS in Cincinnati,Ohio in 1998 and that's when I started learning so much more.We,ve been to see Dr.Rubinstein and got to meet Dr.Taybi.We take Andrew to Cincinnati,OH. often to Children's Hospital for tests and check-ups,he sees several different Dr.'s there.I look forward to hearing from other parents and would be happy to share information with others. Kendra

rosa maria vendrell

rosavv@eresmas.es

barcelona|catalonia

|i work in a doctors desk, i knew a child of 7 years old, ans sence last two weeks the parents did not known the rts, and just i lookfoward some information to tell them, i have been impress a lot fot that little child he is so nice,and i would like to help the family, as hard i could......

Sandra Aguilar

j5541985@aol.com

Irving|TX|United States

I have a 10 yr old son named Christian with RTS. He was diagnosed at 6 months old. Like most others with RTS, Christian is a VERY loveable individual. He loves music and videos. He attends a public school and is being mainstreamed. The information in this website is so wonderful. Until recently I was not very active into looking into the websites available for RTS. Mainly because I was afraid. Of what, I don't know. I guess the unknown. My sons godmother Amy is the one who constantly investigated for me and would relay some of the information to me. Well, I'm glad I'm finally doing the work. Reading about all the other children and families with RTS gives me a sense of calm. I send my thumbs up to the educators and physicians who expressed their interest in learning more of this syndrome. I only wished that more had the desire to learn more about RTS. I think that is one of the most frustrating things, When you have a teacher of doctor not knowing what to do or how to do it because of their lack of knowledge. I'd love to hear from other parents or individuals of RTS. With each others support and understanding, we can all get through this! God Bless!

Elizabeth

speedm@ptialaska.net

Soldotna|AK|USA

I have my 12 y/o neice, Melissa. I've known since she was a baby that she had RTS. She's lived a long 12 yrs. Her father, my brother, died when she was 6 and her brother died when she was 9. She suffered through 2 yrs of abuse and neglect before my husband and I gained custody of her. She's a trooper. She's starting to try to talk again and she's in a school where she's being mainstreamed. She loves it and the kids love her. As does our entire family. I need support and advice. If anyone is willing to help me. ~Elizabeth

Ehlma

ehlma@hotmail.com

Monterrey|Nuevo Leon|Mexico

I have a 10 yr old boy, his name is Juan Pablo he is a very lovely boy, here in Mexico , the RTS is unknown, i have to investigate about what does he have and have to travel to Dallas Tx. Dr. Golder Wilson make the diagnosis 9 years ago , but it was so hard for me to try to do something for him,because nobody knows nothing about the RTS, have to make a lot of therapies, to try to help him, until now we have made a lot of things but I think is not enough, Im having a lot of trouble in his behavior and I need help, I want the parent groups make comments of how I can help him.