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13.11.2000 Hallo! Wir sind eine Familie mit einem RTS-Kind. David ist am
04.12.1992 geboren, also fast 8 Jahre alt. Er hat eine Schwester mit dem Namen Rebecca (3 Jahre). David ist unser Sonnenschein, trotz der vielen Probleme, die mit RTS einhergehen. David geht seit September 2000 zur Schule. Auch seine Lehrer bescheinigen ihm einen riesigen Ehrgeiz, alles zu lernen. Ihm ärgert es wahnsinnig, wenn er etwas nicht so kann - vor allem wenn seine kleine Schwester es bereits kann. David ist wahnsinnig lieb und hilfsbereit. Vielleicht gibt es jemanden im deutschsprachigen Raum, der mit uns in Kontakt treten möchte. Bis bald Familie Kamps
Familie Kamps michael-olaf.kamps@baypol.bayern.de
Neuburg a. d. Donau, BY Germany -
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11/1/00 Hello,First I'd like to say that this is a great site. We have a 17 year old son,Chris,who has RTS. He's had some
of the surgeries when he was younger, but other than the constipation and being non verble he's doing fine.We know how much he has blessed us.How many people do you know that has a 17 year old that
they can still wrestle with,hug,and still wants to climb in mom or dads lap if he gets hurt. The way he makes people smile makes it all worth it. If any-one would like to e-mail us, feel free to.
Jeff Scott jwscott@apex.net
KY USA -
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Hi I'm Ariane from Switzerland. My brother
has a 3 months old babyboy with
RTS. As he lives in N.Y. we are quite worried and helpless here to imagine how little Justin is. Does anybody now people that have children with RTS here in Switzerland or neighbouring Germany? Thank you so much!
Ariane ariane.fr@freesurf.ch
Basel, BS Switzerland -
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Hi, I miss talking
to everyone on the e-mail list and hearing about everyone, so I wanted to say hi! I'm Becky and my husband Jay and I have 3 children, ages
5, 3 and 2! Our 3 year old is Alexandra, who was diagnosed with RTS at 12 months. She is usually very happy and smiley and brings great joy to those she comes in contact with. She has always been very healthy and we have been very thankful for that. She is very small and doesn't eat very much, she gags sometimes still if she has a cold or if she just doesn't like the texture or the food. She does talk fairly well, but has speech therapy in school and we are working on fine motor skills. It has helped tremendously for her to have a brother and sister to model after and to play with all the time. Thanks for listening! Becky Schmidt
Becky Schmidt Bettysings@yahoo.com
Louisville, KY USA -
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We have a son with
RTS who is almost 40 years old. There were alot of problems when he was little, but at the present time he is "fairly" healthy. I will be very happy to share some of our experiences with anyone
who wants to contact us by e-mail. Our Jimmy is a real blessing and I am so thankful that God saw fit to give him to us. Please know that it gets better! October 16, 2000.
Shyrlee Skorup sdskorup@juno.com
Ft. Lauderdale, FL USA -
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Hello, My daughter is a
Mental Health Counselor and has a client with RTS. I had the privilage of meeting her recently and decided to try and educate myself about RTS. Any suggestions would be appreciated. Thanks, Sandy
Sandy Persinger spersinger@new-quest.net
Prince George, VA USA -
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Hi
everyone! My husband Larry and I are parents of a 10 year old boy with RTS. Jack wasn't diagnosed with RTS until '95 or '96. Holly Ardinger at KU Med in Kansas City made the diagnosis. Jack has had 9
surgeries which include heart, hands, one hip, and his skull. In his early years he was always sick. We believe it was because his body never had a chance to recover between surgeries. Jack weighs
about 62 pounds now, and he still struggles with chronec constipation. We have tried many remedies for this condition. Jack communicates using a few signs
and gestures. We are working on PECS with him. We used to live in Topeka, but we had to relocate when Larry was laid off last year. We live about an hour drive from Gary & Lorrie Baxter's house. I appreciate this web site. God's love & blessings to everyone, & hey it does get better! Love, Lorie Morgan USA lorie@faithmail.com
Lorie Morgan lorie@faithmail.com
Woodston, Ks USA -
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Hi.I have a five year old
daughter with RTS. She's had alot of ear
infections, pnuemonia, 2 seizures, and some problems with her teeth.Other than that shes been pretty healthy. I am looking for some information on potty traing and some helpful tips that have worked.She is my baby and my best friend.I am truly blessed to have her.I look forward to hearing from people.My email address is maejuan1224@aol.com Sincerly,Michelle Alex Ithaca NY
Michelle Alex maejuan1224@aol.com
Ithaca, NY USA -
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Thank you.
Teena Rose resumetoreferral@aol.com
Dayton, OH USA -
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I had a doctors appointment
for myself. My son was with me. The doctor asked
if he had RTS. I had never heard of it before. After reading the articles on RTS, he very well may have it. He has, I would say most of the characteristics but some he does not. His main concern at birth was a heart defect (tricuspid atresia). At 7 weeks of age he went into cardiac arrest and suffered severe brain damage. He's a delightful child, always happy, does not like loud noises, plays with his hands, has the nose and has trouble with his hands but his is the 4th and 5th digit syndactly. He has eating trouble but years ago got a g-tube and is on ensure (which regulates constipation) I could go on with similarities and altercations. I'd like to know who can tell me yes or no. I have not thought about "why" and "what happened" conversations in quite some time. I would like to know now. It matters again. Thanks to anyone who can enlighten me. Jen
Jennifer Solarz Vojdani sjcarlife@cs.com
Bentonville, AR USA -
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Hello, I must first
say congratulations, what an informative site! My fiances brother (Simon) has Rubinstein Taybi and I did not know much at all about this
syndrome. I am overwhelmed at the similarities in physical appearance of the children/adults. It was like seeing Simon smiling back at me. Simon is 21 and at a life skills college in Grimsby, England. He is the friendliest and warmest person I know and inspite of his difficulties is always cheerful and smiling. Simon has welcomed me into "his family" and has even asked to be his brothers best man (we haven't a clue where he has learnt about this!!). This site has enabled me to learn about this special person who I am priveledged to have met. He is an inspiration and it is a joy to be part of his life. Natalie Palmer , England
Natalie Palmer N_J_Palmer@hotmail.com
Benfleet, Essex England -
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Mi hijo
tiene RTS y todos lo queremos ya que es un niño muy amable. y ojalá pueda contactar a familiares de personas con RTS y poder intercambiar experiencias. gracias
Elsa Velasquez Espinosa elseve@latinmail.com
Tehuantepec, Oaxaca Mexico -
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During a slow moment at work, we pulled up all the kids pictures. Everyones response was a joyous "They're so cute!!" Our kids really do bless and teach everyone they come in contact with.
j.lowe jlowe@uci.edu
brea, ca USA -
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My daughter April is 13 and has RTS. We need to
hear from people in MS, TN, and AR, especially if you have a early teenage child with scoliosis and/or hip and knee problems. April's knees are turning outward, and her doctor says it is
related to her RTS. Can someone give us some more information, especially with treatments that worked? I will respond to all correspondence. Thank you. Gina
Gina Lindsey GinainSouthaven@webtv.net
Southaven, MS USA -
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My daughter is
13 and has RTS.Am always trying to find info on this syndrome.If anyone wants to email me,feel free.
Gina Lindsey GinainSouthaven@webtv.net
Southaven, Ms USA -
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I have recently
begun to work at a center where one of the clients has RTS. I am interested in learning more about RTS and things that I can do to work with her and her behaviors. She is in her 30's and a wonderful
person to be with. I was blessed with the previledge of being the mother of a wonder child who was born with Trisomy 18 (Edwards Syn). Any suggestions on helping to work with her would make my job
much more fullfilling. Thank You
cathy patch cmpatch@hotmail.com
Rural Retreat, VA USA -
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I have a son Jesse
diagnosed with Ruenstein-Taybi Syndrome.I am so pleased to find your incredible sight!
Tamara Moore mommysinger@yahoo.com
Grass Valley, CA USA -
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In
collaboration with the Department of Genetics at Henry Ford Hospital, I am preparing a review of myelodysplastic syndrome/acute myeloblastic leukemia in
patients with RTS. If you are aware of any examples that have or have not been published, please contact me by e-mail.Hopefully, this will contribute to our knowlege about RTS. Thank you.
Dr.Augustine L.Perrotta alp2150@pol.net
Clinton Township , Mi USA -
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Hi! My name
is Sofia. I work with Autistic children and one of the girls also hase RTS. She is the cutest thing!She is 10 yeres old. I wonder if annyone hase
anny experience with this combination,Autism and RTS. Glad for anny respons!! Thank you!
Sofia sofialin100@hotmail.com
Stockholm, Sweden -
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What beautiful people
these children are. I am thankful that there are God-gifted care takers who must be giving an enourmous amount of themselves to lovingly care for these treasures
Mary McGuire mary0408@aol.com
Des Moines, ia USA -
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My godson has RTS and I am
needing to find others in Dallas, Texas with RTS who my best friend can talk to. Please help
Amy Barbosa abarbosa@gardere.com
Dallas, TX USA -
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I am a graduate student
providing alternative communication therapy services
for a 7-year-old with RTS. I needed to read up on the sites available for better preparation in my sessions. Thank you so much for your information. It has been very helpful.
Kathryn Genton shorninjawoman@juno.com
Oxford, MS USA -
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This is a
fabulous site. I have a child with a different rare genetic disorder -- Langer-Giedion Syndrome -- and have been looking at other support
sites as we look at expanding our own. Your site is easy to navigate, and has a wealth of personal stories and medical information. The Our Pages section is beautiful, and of immense help to families. Best wishes to you all, Louise
Louise Kinross lkinross@home.com
Toronto, ON Canada -
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I have a five year old
granddaughter, Monique, who has RTS. She was almost
three years old before she was diagnosed with RTS For 2-1/2 years she went through all sorts of tests. She still goes to the hospital about every six months to check on her progress. Her pediatrician didn't suspect anything was wrong until she was six months old and only weighed 9 lbs. She has an older and a younger sister who are fine. They have been a great help with Monique. She was almost 20 months old before she crawled, and 30 months before she walked. So, my daughter had two babies to carry as there are two years old between each of my granddaughters. Monique loves to watch cartoons. She will go to the TV and VCR. She is very fascinated with them. She says only a few words at this time, but is able to get her point across. She will take you by the hand and lead you to what she wants. She has been having all sorts of therapy and schooling since she was about a year old. She has been going to a special school for the past three years. In September when school starts up again she will go to a regular school that has a special education program in it. Her older sister will be going into the second grade at the same school. Sometimes other people will make fun of Monique, but Cherice, my oldest granddaughter will stick up for her. We always taught our children not to make fun of people with a handicap, and my daughter does the same. I come on the web about once a month or so to see if there is any new information for my daughter.
Bonnie Lewis bhl@cornell.edu
Alpine, NY USA -
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Hello! I'm a supervisor at a day
program here in a suburb of Phoenix, Arizona.
I recently have had a young man named Scott join with us at the day program. He is a delight to work! He can be very head strong but, he has taught me alot more about sipmle things such as slowing down and really listening. He is a great a person. I have been trying to learn sign language so that he and I can get things done. He has been patientwith me! I truely enjoy working with this young man. I would like to hear from anybody who can tell me more about this syndrome. I want to learn as much as possibile. Lots of love to all of you out there with one of these RTS treasures! Love Katherine Tempe, Az. USA
Katherine Hughes KatherineHughes@tch-az.com
Tempe, Az USA -
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Hi I am
a third year university student studying special education teaching.
I recently went out into a school and had to conduct a case study on a boy with RTS. He was the sweetest and most happiest boy I have ever met and it was not hard to fall in love with him. I read the poems on this web page and thought they were truly beautiful. Love Kirsten
Kirsten Barry kabarry9@hotmail.com
Perth, WA Australia -
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Hi, My name is
Lyn, I have a daughter with RTS. Amy is 10 years old now, we
live in Leeton, New South Wales, Australia. I only know of 2 other children in Australia with RTS that I have been in contact with. I would love to know if I can talk to some other families as well. Can we be added to the registry please. I have lots of questions. Thankyou Lyn
Lyn Vaughan glvaughan@webfront.net.au
Leeton, NSW Australia -
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What a
pleasure to share insights, feelings, disappointments, trials, tribulations and, above all, hopes and succeesses, with people who understand. Thank you all.
TRACEY & MARK MAIDENS tracey@tbt.co.za
JOHANNESBURG, South Africa -
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Hi to
all. Glad to join the worldwide family as I am the sister of identical
twins aged 27 with RTS and believe that sharing experiences/information and knowledge is imperative for all to understand the complexities of RTS. Lets learn from each other - and remember none of us are alone!
Michelle mitch.walt@virgin.net
Essex, England -
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We are a family from Port
Elizabeth in South Africa, and have never been able to connect with any other South African families with RTS connections, and would
love to hear from any if there are. The RTS site is a wonderful tool and has been a blessing to us and our daughter Melissa who is 17 going on 18.
Adele Meusel realtors@netactive.co.za
Port Elizabeth, EC South Africa -
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Wonderful site!
michelle
USA -
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I'm a special education teacher in a small community that has only 1 high school. In that high
school, we have two children with RTS. Each of these
children are so different, yet so unique. They are so loving & happy. I'm thankful that I've got to teach them because they have really blessed my life.
Amy
KY USA -
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I have a close friend from Minnesota named Kendra Goerger. She has this disease. Since I am only 14 I don't know much
about it but that Kendra is always
sick. Kendra has a very loving family that loves her very much. I know it is really hard for her parents and her older brother to handle sometimes. I just want to say get well Kendra and get well to all the other children that have RTS. And Kendra we all love you. From Ashley, Dani, Deb, Myron, and Dexter!!!
Ashley ashleyn114@hotmail.com
Onawa, IA USA -
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9 Year old RTS son with lots of questions.
Rosemary Murphy kmm@ime.net
Brunswick, ME USA -
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Hello again. I wrote about a year
ago about my granddaughter, Michaela
(Micki) who is now 29 months old. She is such a delightful little girl & so special to everyone who knows her. She has come a long way since then. She is now starting to walk, use sign language to let you know what she wants or needs & is quite independent. She loves to swing & let the sun shine on her pretty little face. When she's not at one therapy or another & is in the house she likes to watch her favorite videos, have you read to her or play with her many toys. She has a big sister, almost 6 years old, & she loves it when she does a dance or sings her a song. Her Mommy is VERY involved with RTS & keeps on top of things so Micki is sure to get all the help she can to help her continue progressing & growing into a beautiful little girl. I know it's a struggle, but Micki is very blessed to have a loving & supportive family who do what they can to help make life a little easier for for Michaela, her Mommy & Daddy.We love being with our daughter, son-in-law & two granddaughters & we've learned alot about special needs children & just how precious they are. We admire them more then they will ever know & marvel at everything they accomplish. You never know until you are faced with a special situation, just how strong you can be.Thank you for your support.
Toni Smoot frogim@aol.com
Georgetown, CA USA -
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My daughter, Emily Rose Lowe,
has Rubinstein-Taybi Syndrome.Can we be added to the registry?
David Lowe dlowe@acsd.k12.ca.us
Brea, CA. USA -
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We have a five-week-old
son diagnosed with RTS. Reading the basics on this
syndrome was pretty scary, we had never heard of it before and neither had anyone we knew. Finding this website has been a blessing. The stories from other families have been encouraging and we hope to add our own encouragement as time goes on.
Katherine Yost katherineyost@cs.com
Pelham, NH USA -
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My name is Julie, and I am
a twenty year old babysitter of a wonderful little boy with RTS. I visited this site so I could find out more about his syndrome,
and to learn ways to help him. I met Ben last summer, he was 10 years old, and could not speak at all. I have just recently come back from school to find that he can say "hi!" he also immitates sounds, and I feel that he will soon be able to speak--if only just a few words. I never knew that something like the word "hi" could mean so much--Ben is an incredible kid, and I think the parents of children with RTS are incredible people. Its hard work, but with Ben, the rewards have made it worth it.
Julie Schwartz schwa124@msu.edu
west bloomfield, mi USA -
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Keep up the good
work, l just wish we had something here in Australia, for
the kids here with RTS. Back in 1985 when my grandson Joshua was born, { Joshua is now my son through adoption } there were 27 cases in Australia and Joshua was the 3rd in our State of Victoria, so l expect there are a few more now. Later on l hope to add Joshua's photo etc...Best Wishes to you all...Ace's and Joshua Smith
Ace's Smith aces.smith@angelfire.com
Wangaratta, Vic Australia -
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My
name is rachel Alongi and i have rts when i was born very healthy, Until i was six months old i stopped growing and etc. The years i had ear effections wasn't easy at all i had ear effections i had colds
all the time. I didn't like having them.I was always in the hospital i do remember that.When i was ten years old i was disgnosed with RTS.I didn't know i had RTS until i was sixteen years old,my
Mother told me i had rts, I didn't know what RTS was at all i was a highschool 10th grader and i had no idea what rts was or what it did or i had it
until than.Iam now twenty years old a college student who loves school friends family especially the computer. I know that im glad to be on the RTS E-mail List its the best i hear things from other people aspects of their children having RTS. And i give them hope and love. Your friend always!!!!Rachel Alongi 20rts
Rachel Alongi rachel@3-cities.com
Kennewick, Wa USA -
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I just visit this
site because my grand niece has RTS and I like to keep
informed on the subject so if I can be of any help to her and her parents. She is an adorable child and so good natured I get to see her about evey other months and it is always a pleasure to play with her and so easy to make her laugh (which makes me laugh in the process) ( she is a little over 2 years old) I really admire my niece and her husband for their patience and how much they must have worked with her to have accomplished so much, I just saw her last Sunday and she is starting to walk. This is the first time I have gotten on the webb site because I finally got more memory on my computer at work and will be checking it often from now on.Keep up the good work and best wishes to all of you out there.God Bless you all Sincerely Veronica Smoot
Veronica Smoot ronnie@tecprint.com
Synnyvale, CA USA -
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