Anyone Out There Raising a Child with Velo-Cardio-Facial Syndrome or DiGeorge?

Hello N.,

I am not familiar with VCFS, but I have a child that was supposedly born with some kind of syndrome, so I can relate on some level. I say "supposedly" because as much as his first doctors tried to squeeze him into a category, he never fit the right criteria for any.

Early on I decided to avoid any kind of label on my child because I discovered that, even when children share a condition, the way it plays out is ALWAYS unique. Diagnosis may be useful for insurance purposes and things like that, but don't let it predetermine your child's future. Let your daughter be your guide. Look at her and attend HER particular needs.

A word of caution: while it might be helpful to speak to other parents, don't think of it as if you're seeing the future. Don't automatically think that everything that can happen will happen.

And don't let the diagnosis EVER tell you what she will not be able to do. It can improve the outcome immensely. Just to give you an example:

I was told my child was blind. He's not, he is nearsighted. I was told he would have developmental delays; he didn't, in fact, he spoke earlier than any of the other children I know and solved jigsaw puzzles by age 2. I was told he might have neurological problems. Once again, wrong.

I am so glad I didn't pay attention to what was written on a medical chart. Today the doctors can't believe their eyes... Despite his vision problems, respiratory and digestive issues, he is a happy, confident child.

Good luck and trust your child.

I have the perfect resource for you, and it will bring you hope and inspiration as well. http://www.FriendsofQuinn.com It's a website started by a young man who has VCFS. He's written a book about his experience, his life and what it was like growing up with the challenges he faced. My son has special needs, and I have been to this site because it is a support site for all special needs. I've written emails to Quinn, and he wrote me back. So I am certain he will be happy to share information, resources and support with you.

Blessings,
B.

Hello, I have worked with children with a diagnosis of VCF syndrome. A behavioral approach and early skill intervention is important for your family as well as your daughter. Before age of 3 years the OC Regional Center may offer you services in different developmental areas and then at age 3 she is eligible, based on a medical diagnosis which may interfere with her "typical" development, for services (special ed preschool for age 3 and 4) at local school district. You may want to contact both at this time. HOpe this helps.

I'm sorry to hear what your daughter and family are facing. Since she doesn't have the heart and hypocalcemia, is her condition more treatable? As a mom, there is nothing worse than not being able to make it all better for our babies. My daughter has a neurological disorder, though not life-threatening, there is no cure.

My advice to you is to do as much research as you can:interent, libraries, etc. Check with children's hospitals (Loma Linda, CHOC, Mattel's Children Hospital at UCLA) for support groups. Has your daughter been to Scripps since that is near you? Look for studies/research being conducted about your daughter's condition. This help is free and can be beneficial. My daughter is beginning a study through UCLA.

During all of this, take time to relax. I know, easier said than done. Find a way to let go of the stress you are feeling during this rough time. Is your hubby home through all of this? I saw the military family note-thank him for his service!

I don't know what Velo-Cardio-Facial Syndrome is. But most of the problems we have are allergy related. NAET.com for allergy eliminations. Also, Prescription for Nutritional Healing by Balch. You may also want to speak to a Naturopathic Doctor as well as western medicine doctor. Also, Accupuncture.

Be well.

N.