- Current Age:
- Home State:
- Diagnosis Date:
- April 18, 2016
- MPS/Sanfilippo Type:
- MPS III-A
- John and Julie
What it felt like when we learned our child has Sanfilippo Syndrome…
We had never heard of Sanfilippo Syndrome. We went through a learning process and did not like what we learned. Devastated is to put it mildly. Our only son would lose everything. How do you cope with this? You don’t! We learned to adjust. Now we take each day as it comes, hoping for a cure for all Sanfilippo children.
What our child loves this most is…
Landon loves to jump in his little trampoline like all Sanfilippo children. He loves riding the four wheeler with his dad and sister. He enjoys playing with his sister when she gets home from school. His most favorite thing is toys that make sound and plays music.
How has Sanfilippo affected our entire family?
We know that our future with Landon will be hard. God has truly blessed us with him. He has the sweetest smile that lights up a room. Landon has also taught us so much in life about appreciating everyday to its fullest and what’s truly important in life.
The hardest part of being a Sanfilippo parent is …
Knowing that all of our hopes and dreams for our child will not come true. What little bit that he has learned will slowly leave him. Knowing this we realize that everyday is special and precious.
If we could ask just one thing from the world/people, it would be…
Pray for us, find a cure and help the world to understand the Sanfilippo children better.
Why are we asking you to donate to Cure Sanfilippo Foundation?
Donating gives the families now and the future families hope for a cure.