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Name: Lisaet

[ Original Post ]

I have two little guys. My oldest will be 4 in June and my youngest will be 2 this month. Neither boy is able to sit on their own, they are non-verbal, of course can't walk or feed themselves. We were given a diagnosis by Boston Children's Hospital of ADSL deficiency or Adynlsuccinase Lyase deficiency. It is a very rare metabolic condition and I can find medical definitions by the handfuls on the internet but would really like to connect with another mom. I believe that you have to put aside the names and disagnoses of your kids and just help them reach their full potential, but that's really hard when you have no idea what that potential is! I have both boys on a milk free diet and don't know if it makes a difference, but it makes me feel like I am doing something. I am sure all you know just how I feel. Any feedback is welcomed! email me at [email protected]. Thanks ↓

Name: lindalu | Date: May 4th, 2007 1:39 AM

Hey Lisaet ,you do have the best medical care you could ever ask for. Boston, Ma. has the best hospitals and facilities one could want. I do agree with you, you do have to put aside the label and focus on the child! I did that exact same thing and my daughter grew out side her ;quote; disability label ;unquote; She has become a strong young lady with all the same aspirations as any one her age. She has never been handed excuses for why she could or could not do some thing. No she does not have the same diagnoses as your child she has a congenital spinal cord injury. I do have to say when the labels are lifted the sky is the limit! Keep the same views you have and your child will prosper! ↑