Thank you for sharing this story! It is so important to increase awareness and understanding of this rare disease to prevent unnecessary suffering for others going forward.
My brother passed 2 years after his transplant. My son, at 16, is doing well so far. At 39 years old, I have dangerous blood pressures at times even with meds. I have severe hearing loss. No energy, chronic kidney infection, and slight decline in kidney functioning. I’m scared to death for my son, he’s such a good boy. He deserves to live a long happy life. My brother deserved to as well as many cousins. It’s so hard to know and to have seen for myself what my son will have to go through one day 😢
We have Alpert's syndrome in my family. My 2 sisters and myself have it. My dad and his brother had it, but both passed. My son at age 37. had his first transplant from a living donor. and is doing really good. My dad died in 1971 when they were just learning about it. My uncle had. 2 transplants that lasted 30 year with both. He decided not to get a third because he wanted someone. younger to have a turn. Don't worry its all going to be okay. I have 3 other children one boy and 2 girls. Still don't know if they have it yet.I have severe hearing loss and in stage 2 kidney failure.
Thank you for sharing this story! It is so important to increase awareness and understanding of this rare disease to prevent unnecessary suffering for others going forward.
My brother passed 2 years after his transplant. My son, at 16, is doing well so far. At 39 years old, I have dangerous blood pressures at times even with meds. I have severe hearing loss. No energy, chronic kidney infection, and slight decline in kidney functioning. I’m scared to death for my son, he’s such a good boy. He deserves to live a long happy life. My brother deserved to as well as many cousins. It’s so hard to know and to have seen for myself what my son will have to go through one day 😢
We have Alpert's syndrome in my family. My 2 sisters and myself have it. My dad and his brother had it, but both passed. My son at age 37. had his first transplant from a living donor. and is doing really good. My dad died in 1971 when they were just learning about it. My uncle had. 2 transplants that lasted 30 year with both. He decided not to get a third because he wanted someone. younger to have a turn. Don't worry its all going to be okay. I have 3 other children one boy and 2 girls. Still don't know if they have it yet.I have severe hearing loss and in stage 2 kidney failure.