- GM1 Gangliosidosis
- Interviews
Alynda's interview
How did all start?
I am a carrier and so was my ex boyfriend we had a child who was effected with this disease . His name was Kyle Lee Lindley-murray he was born 07/02/1991 he passed away 02/17/2002. He was 11 years old.
Do you already have a diagnosis? How long did it take you to get it?
My son was given 3 to 10 years to live when he was diagnosed at age 18 months. When we finally had him tested it took 3 weeks to get a diagnosis.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Kyle never walked by himself and was in a wheelchair by the time he was 3 years old . At around 3 years he started having sezures. When he was 8 years old he had a NG tube placed for feedings. His seizures continued we had to use a suction machine and a nebulizer.
What has been the most useful thing for you so far?
The most useful thing throughout hos illness was the support i had from National Tay Sachs and allied disease foundation. I have attended two national conventions on the east coast and my parents kyles far parents attended onion the west coast SF.
What have been your biggest difficulties?
The most difficult thing was knowing we had limited time with Kyle and there was no cure . As there is still no cure .
How has your social and family environment reacted? Have your social or family relationships changed?
My family and friends were a huge support for me and my son. The community we live in is small and very supportive
What things have you stopped doing?
I stopped caring for my son and have another son who is unaffected they were 7 years apart in age
What do you think about the future?
I jave hope that someday there will be a cure for this horrible disease and no other family or child willhave to go through what we did.
So far, which years have been the best years in your life? What have you done during them?
The best years of my life has been raising my 2 sons and meeting my boyfriend of 10 years
