Survival

hi my name is Barbara.

My my daughter Lisa Marie was born in June 19886 and was diagnosed with this terrible disease at six months old. At this time she was the only case our doctors had come across so we're referring to books. I would have her checked every three months and I would explain what was happening and they would look it up. I know there's nothing they can do this disease but she had nothing, no feeding tube etc. She died at 2 1/2 and she weight 12 pounds. So although still no cure when I read about cases now they seem to make them more comfortable which is a blessing thank you God xxx