A Plea For Help from a Mom Whose Son has a Rare Disease
A Plea for Help
This is a letter I received this week. My heart aches for them! If you can help them, please do!
Hello,
My name is Alina, my family and I live in Austin, and I have a personal story that I’m hoping you will be interested in covering. Your coverage would be a huge help for our son to have a chance at life.
My 5-year-old son Simon has been sinking baskets on his Little Tykes hoop since he was a toddler. People’s jaws hit the ground when they see his skills. Any parent whose child showed this kind of potential would naturally be thinking about what their future could hold. But Simon’s dad and I don’t get to dream those kinds of dreams. Because of the worst disease you’ve probably never heard of.
Simon has Sanfilippo Syndrome, a genetic degenerative brain disorder in children caused by a single missing enzyme. It’s like Alzheimer’s in children. And unless ongoing research is able to find a treatment, Simon will lose his ability to shoot baskets, lose the ability to walk and talk, suffer movement disorders, and experience a lot of pain and suffering. All before passing away in his early teens.
Like any parent, we are fighting for our son. For his chance at a life without pain and suffering. For a life where he has the opportunity to continue enjoying basketball, the thing that brings him so much joy right now.
Sanfilippo is a rare disease, so it’s up to families like ours to fundraise the millions needed for promising research that could help our children.
We’re working to raise $1 million to help fund two new research pathways that could benefit Simon and other children with Sanfilippo Syndrome. Research that could make a treatment available that allows Simon to live, to thrive, and to someday play on a basketball team.
We have created a three-minute viral video, “Help Simon,” to help raise $1 million for this critical research. The video is at www.HelpSimon.com, and it showcases his remarkable basketball skills (truly, you have to see it to believe it) and how it will all be lost because of Sanfilippo unless research finds a treatment. Help Simon launched Nov. 16 and people around the country are already sharing it far and wide. http://www.HelpSimon.com
Your readers/viewers might be interested in hearing the story of a local boy whose promising basketball future will be cut short because of a rare disease and how people everywhere are chipping in to help fund research that could give him a chance at life.
Will you please consider covering Simon’s story? So many people have never heard of Sanfilippo. But when they do, they are shocked something like this exists and are eager to help children like Simon.
Thank you for your kind consideration of our story.
Dear Alina,
How could I not answer your plea for help? Simon is precious and my readers are some of the best people in the world. I sincerely hope this makes a difference and I will be praying for Simon and the other children who are fighting this horrible disease, as well as their parents.
Teresa from NanaHood
