BellaOnline Forums Family Special Needs Children Parents of Teens and Adults with Disabilities

Thank you, Pam, for these articles and resources. I have been given a shocking blow as I only recently learned that my adult daughter has the same genetic disorder that killed my son.

Her symptoms had been increasing after puberty but we were told that girls could not get this genetic disorder as it is X-linked. In any case, the past six months of testing revealed that she indeed does suffer from this. She has been changing rapidly over the last two years. Soon she will undergo enzyme replacement therapy which she will need for the rest of her life.

My head is reeling from the news and the realization of her changed future.

What a shock to see your "typical" healthy daughter morph into an increasingly disabled person. I am too upset to even begin to research her transition into adulthood (she turns 21 late this year.)

Thank you for doing this for me.