Elizabeth “Ellie” Shamaly
- Current Age:
- Home State:
- Diagnosis Date:
- August 17, 2017
- MPS/Sanfilippo Type:
- MPS III-B
- Kerry and Josephine
What it felt like when we learned our child has Sanfilippo Syndrome…
To learn that Ellie had Sanfilippo Syndrome was the worst moment of our lives. All of our hopes and dreams for Ellie and our family were taken away from us. We left the hospital feeling broken and questioning how we could possibly continue to move forward. In the days that followed, the weight of her diagnosis made each passing moment feel like an eternity, but soon people starting reaching out to us and offering their love and support. We decided to not grieve our daughter and made a promise to enjoy the time we have together and fight for her future.
What our child Loves the most is…
Ellie loves her family more than anything and it’s important to her that we are together as much as possible. Spending time outdoors is her favorite thing to do. She enjoys going to the park, splashing in the pool and playing in the snow. At home, she loves to slide into her ball pit, paint and watch Elmo. She also loves anything with her favorite color, purple.
How has Sanfilippo affected our child?
We are so thankful that Ellie is still learning and growing every day, but her language development has suffered greatly. She speaks in mostly two-word phrases and is able to get her needs met. There are moments when we are unable to understand her and she gets very frustrated with us. Although, we know that Ellie loves her family she has never said “I love you” to us and it is heartbreaking to know that we may never hear those words.
How has Sanfilippo affected our entire family?
Sanfilippo Syndrome has changed the way we think about everything. We live our lives day by day focusing on fighting for Ellie and keeping her happy. Things that we used to think were important are now trivial. All that matters now is our family and those we love.
The hardest part of being a Sanfilippo parent is …
The hardest part is knowing that time is against us. With each passing moment, Ellie’s body and mind are being damaged. We know that a cure is near, but will it available in time to save Ellie?
The biggest misconception people have about being a Sanfilippo parent is…
The biggest misconception is that we need to be treated differently. Sometimes our friends and family are apprehensive to share what is happening in their lives for fear of burdening us. For us it’s important to keep life as normal as possible.
If we could ask just one thing from the world/people, it would be …
With all that is going on in the world today it is easy to lose sight of what’s important. I think we can all agree that no child should suffer this terrible fate. Please unite with us as we fight to find a cure for Sanfilippo Syndrome.
Why are we asking you to donate to Cure Sanfilippo Foundation?
We are asking you to donate to Cure Sanfilippo Foundation because our daughter’s life depends on it. There is currently no approved treatment and not one child has survived this horrific illness. Donations are necessary to fund clinical trials, which we are hopeful will provide a treatment for all these deserving children. We pray that one day our daughter and all the other Sanfilippo children will have the life they were born to live.