My son has vcfs

iVillage Member
Registered: 07-10-2003
My son has vcfs
3
Thu, 07-10-2003 - 7:32pm
I am new to this board..........My husband and I just found out that our 7 yr old son has Velo-Cardio-Facial syndrome (part of his 22nd chromosone i deleted). We knew that Sterling was "special" since he was an infant. His IQ is 63 and he has severe behavioral, emotional, speech and learning disabilities. And to top that off, he has a ventricular septal heart defect, dysmorphic facial features and scoliosis. There are so many other problems, but the main thing is that we finally have a name for all of these abnormalities. I would appreciate you prayers and support during this hectic time.

Martha
iVillage Member
Registered: 03-21-2003
In reply to: ladydrew
Thu, 07-10-2003 - 8:10pm
Hello Martha,

Welcome to the board.Glad to have you here with us.My name is Julie,I am a 27 year old,stay at home mom to 2 kids.A daughter that is 6,her name is Erika.And my son is 4,his name is Jon.He has Global Delays,Development Delays,Speech Delays.He was diagnosised with Mental Retardation last May.He has had 2 eye surgeries.He has Strabismus and Exotropia that deals with his vision and he has a lazy eye.He has low muscle tones also.And he is allergic to all dairy products,so we have to watch what he eats and drinks.And we have to keep a eye on his spine to see if it curves(scoliosis) again.We live in Tennessee.My husband works 2nd shift at a brake plant a hour from here.He is a Supervisor/Mechanic.And he is 29 years old.His name is David.We have been married for 7 years on April 27.

And now we have to have my son tested for Fragile X Syndrom and have his chromosomes and DNA tested as well.And he has crooked toes so we are going to have to check for that also.

Sending (((((((((((((((PRAYERS & HUGS)))))))))))))))))))))))))))))to you and your family in your time of need.You can come here anytime you need to talk or whatever.

Hugs,

Julie

 

iVillage Member
Registered: 04-05-2003
In reply to: ladydrew
Fri, 07-11-2003 - 6:10pm
Hi Martha,

I hope you find support on these boards as I have. I am fairly new here, too. My name is Netti and I am married and have 3 children. My sons are 11 and 8 and my special needs child is Jenna who is 3. She was born at 25 weeks and has many issues. She has severe CP, g-tube fed, is non verbal, vp shunt and siezure disorder. She cannot walk or crawl but can sit unsupported but is wobbly. She is happy most of the time except when we do the PT, OT, Speech and Early Childhood therapies. She smiles and laughs and claps her hands. She is a sweet little girl and we are so happy to have her. It doesn't mean that I don't wish things were easier for her as I suppose you must for you son. I hope you find the answers you are looking for and find the strength you need to deal with it all. Take Care and Good Luck!! Netti and Jenna

PS, both Jenna and my younger son have a VSD also
iVillage Member
Registered: 07-27-2003
In reply to: ladydrew
Sun, 07-27-2003 - 7:27pm
Ladydrew, my sister in law has a son who was diagnosed with vcfs when he was a toddler. He's 14 now. Over the years she's been pretty involved with support groups for parents with vcfs children. What part of the country are you in? If it would help, I'd be happy to hook you up with her for some more information.