H! My name is Penny and I’m looking to find a support group or just someone to talk to, who is located near me. I am located in Memphis, Indiana (USA) and I’ve looked on line and the nearest support group is in Ohio. (If I looked in the right place?). My husband and I are both feeling overwhelmed and “lost”. Our 35 month old was just diagnosed with FXS. If anyone could help… it would be greatly appreciated. Thanks, PennyC
Hi, Penny.
I am VERY new to this online support thing. I found out about 8 months ago that both my 7 1/2 yr old son and 2 yr. old daughter have Fragile X Syndrome. I am in Utah though and read your letters and I worried maybe you have not received support yet. We have a great base here in Utah and I am actually diving right in to learning more.
I know great place that you can look for information.
Contact Louise Gane at the M.I.N.D. Institute at UC Davis in Sacramento, California. They do research on Fragile X Syndrome there.
Also, you can find out everything you need to know at www.fragilex.org
Hang in there. Your son will be OK. He will be happy and he will make you happy.
Let me know if I can help.
designer
Hello everyone!
Sorry you have to get this email but we’re moving and you know how organized AT&T is, right? We’ll be back online September 20th. Take care, God bless and hugs to all of you…
The Nichols’ Clan.
Hi Penny! I just joined today because I am very frustrated in not finding any support in INDIANA! I live in Evansville, IN, and have yet to find any support groups. Really, no one here seems to have ever heard of Fragile X. I have a 5 1/2 year old son, and he was just diagnosed with FX about 2 months ago. You are lucky to get a diagnosis so early! (Compared to mine.) Do you have a boy or girl? I am more than willing to talk; I am feeling pretty overwhelmed myself.
Jessica
Designer & Tonks, Thanks for your e-mails and sorry it took so long to get back. Things to be moving pretty fast… this week was the evaluation for preschool (OT and Speech) and I have a meeting with the school psychologist on Thursday. Yes, I did finally contact someone here in Indiana and gots of new info. and support. Thanks, again, for coming to my “rescue” and letting me know I’m not alone… Penny
Jessica, Hi from Indiana!!! You are only 2 hours away from me! I live in Memphis, Indiana (real close to Sellersburg). I know what you mean about feeling overwhelmed… I got the diagnosis on Sept.5th (our oldest daughters birthday, she turned 19) and WOW did I hit rock bottom! No, I couldn’t find any other parents of FXS and everyone I told just stared at me blankly. But, then I didn’t know what it was until my son was diagnosed. I contacted the fragilex.com and found out there weren’t any support groups close to me, but I found one group that is for all parents of diabled children.
My story:My husband and I have been married for 22 years and have a 21 year old son, 19 year daughter and our “little surprise blessing from God” is our Fragile X son, Jonah, who will turn 3 on Oct. 8th.
I immediatly called family and friends, but still felt “disconnected”. So, I hit the internet looking for help, support and answers. It took me a few days, but I finally found the correct support group. I even talked to a mom who lives just north of Indianapolis… she was awesome! She has 2 kids with Fragile X and just talking to her, I started feeling better. I started to realize that all the emotions I was going through… quite normal. I guess we are lucky to have found out so early, but I just didn’t feel lucky when the genetics dr. told us the diagnosis. :-). I think I cried for 2 days and mostly that was from the guilt (my egg) and the losing of the dreams I had for him. I just assumed he would grow up, like the first 2, and be your typical child. Now, of course, we are discovering a whole new world and so far… it’s pretty cool! In a couple of weeks, our oldest son is particpating in a fundraiser for Special Olympics and that’s lets us know that he cares. Our daughter acts just like she’s the momma.
I remember feeling so depressed in the beginning and my husband was not much comfort… I kept hearing “it could be worse, cheer up” and things like “he could still grow out of it”. I felt so much better talking to another person, who knew what I was going through, so please feel free to call me! Just e-mail me at: pennylc_2000@yahoo.com. and I’ll give you my phone number. I’m usually up until 10:30pm every night. Hope to hear from you soon! Penny