- Current Age:
- Home State:
- Diagnosis Date:
- August 13, 2018
- MPS/Sanfilippo Type:
- MPS III-A
- Hannah and Allan
What it felt like when we learned our child has Sanfilippo Syndrome…
It was devastating when we found out that Jackson has Sanfilippo Type A. Although every symptom made sense and finally matched what we have seen throughout his life, there is no comfort in your child being diagnosed with a terminal illness. The doctors told us there is no treatment yet and no cure, he has anywhere from 3 to 8 years to live. A woman once told me that every parent is one phone call away from being dropped to their knees, and unfortunately we received that phone call.
What our child loves this most is…
To run! And jump, and be with his family!
How has Sanfilippo affected our entire family?
Everyone has experienced a different type of grief, none greater than another’s. Each of us has different challenges with this process but it is all because our love for Jackson is so great that no one wants to live this life without him.
The hardest part of being a Sanfilippo parent is …
Watching your child regress and knowing that it will end in them passing away too soon.
The biggest misconception people have about being a Sanfilippo parent is…
That people feel bad for us. We are the luckiest people on earth to have been given this child who is truly a light in this unfair world.
If we could ask just one thing from the world/people, it would be…
To cure Sanfilippo Synrdome.
Why are we asking you to donate to Cure Sanfilippo Foundation?
This can happen to anyone- and donating can help Jackson, and many more in the future have a chance that they have never been given.