Glutaric Acidemia Type 1 (Genetic Cerebral Palsy)

Updated on November 22, 2010
S.J. asks from Cherryville, MO
3 answers

Is anyone familiar with this rare disorder? My son was just diagnosed at one week old and I am in shock and terrified. We see a specialist next week, but I was hoping to hear from those familiar in the meantime.


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answers from St. Louis on

I'm extremely familiar. I have two kids with GA 1. If you would like to contact me, here's my e-mail't freak, while it is rather scary to absorb all the information it is also possible for the kids to do well. Mine are 12 and 21 and they are doing great. While they do have a few minor issues, my 21 year old son plays on the golf team in college and my 12 year old daughter does competitive hip hop and cheer. You would never know by looking at them anything was wrong. Are you close to St. Louis? I'm not familiar with Cherryville....e-mail me and I would be happy to give you my phone number and talk with you as you go thru this scary time.

1 mom found this helpful


answers from Phoenix on

My step daughter was fine until her 18 mo immunization shot in which she had an immediate and sever reaction which caused permanent brain damage. Her diagnosis at the time was CP, autistic and mildly retarded. They never thought she'd walk or talk or function. She's 14 (I've know her since she was 11) and high functioning. Feeds herself, dresses herself, goes to the bathroom herself,speaks but is difficult to understand unless you are around her alot. she got tons of help from the state and the schools but only because my husband fought for it constantly. and she has benefited immensely. So I don't have exact experience that you do, just pray for the best, keep fighting for whatever your son may need. I'll send good thoughts your way!

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answers from Minneapolis on

We just got home from Ukraine a few weeks ago with our daughter, who has CP. We do not know the exact name of her CP yet, but its fairly mild, affects her legs. She can walk with assistance. She was a preemie (30wks) and she had hydrocephalus at birth which likely caused the CP. She doesn't have hydro anymore, it was gone by 8mos of age because her body matured.

ANYWAY, don't freak out yet mama. Its a scary diagnosis but now that we've entered the CP 'world' we are becoming more aware of the disorder. Please write down your questions for the specialist, so you don't forget anything. Bring someone with you if you can, and relax and stay calm! Your little guy will be ok!

1 mom found this helpful
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