- Current Age:
- Home State:
- New York
- Diagnosis Date:
- Oct. 1, 2016
- MPS/Sanfilippo Type:
- MPS III-B
- Elvin and Monica
What it felt like when we learned our child has Sanfilippo Syndrome…
Sad. At first, we where concerned when the doctor informed us he had Sanfilippo. We where asking ourselves, “What is that? Is there a treatment?” When he explained it, we were devastated. The rest of the day, we cried, gave Eli hugs and kisses, and asked ourselves why is this happening to him.
What our Child Loves Most …
He enjoys running and playing with his little brother. They like to play with toy cars and put them on a toy ramp.
How has Sanfilippo affected our child?
Sanfilippo has affected our child to where he has lost the speech he had and his motor skills have declined.
How has Sanfilippo affected our entire family?
Sanfilippo has affected our entire family where we see our son losing his acquired skills, not knowing what tomorrow will bring, and thinking that any day he will no longer be with us.
The hardest part of being a Sanfilippo parent is …
Seeing our child unable to communicate and play with other children. He loves to play and he tries so hard to talk, but regular kids do not understand him. It breaks our hearts.
The biggest misconception people have about being a Sanfilippo parent is …
Nobody knows that we are Sanfilippo parents except our immediate family. Even they do not understand that Eli requires time and patience.
If we could tell people just one thing about Sanfilippo Syndrome, it would be …
Sanfilippo Syndrome is not as rare as it appears. It is estimated that 1 in every 133 people is a carrier of one of the forms of Sanfilippo Syndrome. People may not be afflicted, but they are unknowingly passing this gene onto their children and grandchildren. Sanfilippo may not directly affect you right now, but in the future, it very well could affect someone you know and love.
If we could ask just one thing from the world/people, it would be …
Do not give up on him. Judge him for what he can do. Not for what he can not do.
Why are we asking you to donate to Cure Sanfilippo Foundation?
We are asking for your donations so that a cure can be found to allow all children a chance to live life.