My son has galactosemia, an genetic error of metabolism. Does anyone out there have it? Is there anyone from Texas that knows how to get help from the government such as medicaid or disability? This is my 1st attempt at a discussion. I have been a member for 2 days. Elaine
Just go to the ssi site on the internet and follow the steps to apply.
SSI is a federal program for people who have disablities and are not able to be competetively employed....children can get SSI if their parents meet the income requirements, and if their disability is severe enough. There are also rules around eligibility for state medicaid programs and children with disabilities. How old is your son? Have you been in contact with United Mitochondrial Disease Foundation? I am the mom of a 23 year old son with inborn errors of metabolism (Leigh's syndrome) and I am also a social worker in the field of developmental disabilities...let me know if I can help.
Galactosemia is rare to have a dehabiliting effect. It is basically inability to process lactose (milk products) and he would be on a special diet which is lactose free. I don't believe that there are any added medication for it. A friend works in a neonate nursery and she has seen a number of infants with Galactosemia which are doing fine.
The catch is of course with any inborn errors of metabolism (organic acidemias, fatty oxidation disorders) is early detection and early treatment to maximize effectiveness.
Sherry - D2Hydroxygluataric Aciduria
Nathan - Hydromethylmalonic Acidosis (newborn screening, detections, treatment and now very healthy)
Elaine..if there were to be complications, there are two programs...CLASS and MDCP (Medically Dependent Children's Program). Each has slightly different criteria. CLASS and MDCP places your child on a Medicaid Waiver program, independent of your income and dependent on level of disability. The disability level designated is what the amount of funding allocated.
There is a website which addresses Galactosemia at different levels which I'm sure you've already found. I located it for my friend just on Google.
Best of luck to you and your wonderful son!
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