- GM1 Gangliosidosis
- Interviews
Ashlei and Zachary's interview
How did all start?
Regression starting at 1 year of age, losing words, balance, etc.
Do you already have a diagnosis? How long did it take you to get it?
Yes. 1 1/2 years.
What have been your biggest difficulties?
Tummy aches.
How has your social and family environment reacted? Have your social or family relationships changed?
Yes. Socialize with friends who have had children with a disability.
What things have you stopped doing?
Total care.
What do you think about the future?
My only hope for a future normal life is what God’s Word the Bible promises, to live with my whole family (including my brother who passed away from Gangliosidosis) on paradise earth, perfectly healthy the way God originally intended for mankind to live. Our family’s hope is that this will take place very soon.
So far, which years have been the best years in your life? What have you done during them?
When baby and toddler. 0-3 years
If you had to describe your life in a sentence, what would it be?
I enjoy my Mom and Dad talking to me and helping me to feel better. I enjoy sitting on my Mom’s lap.
Finally, what advice would you give to a person in a similar situation?
Caregivers should be very loving, kind and patient and try to live life as normally as possible with the children. Help them to be as happy as possible.
