Meet Sebastian Estevez, an adorable & energetic 4 year old boy.
You wouldn't know it, but Sebastian is fighting a rare disease that affects 500 children in the United States, Hunter Syndrome.
Sebastian was born completely healthy, symptoms started to show up around the age of three.
“Boys with the disease in that latter portions of their lives will lose their ability to walk, talk, eat" his mother, Jennifer said.
It turns into a childhood Alzheimer’s. At one point, they can’t even recognize their own parents.
Can you imagine? Not being recognized by your own children?
BUT there is hope coming from Ohio. Researchers at Nationwide Children’s Hospital have figured out a cause and a cure. They are ready to go to clinical trials – however, because it’s so rare, there is little funding.
“It’s just a matter of money, it’s just a matter of dollars. It’s insane,” said Mario (his father)
So, for the past year, this family has come together with other parents of Hunter Syndrome to form Project Alive.
Their goal is to keep their children alive by raising $1.5 million by May 15th.
“These boys are losing skills, losing abilities with every day that passes so time really is of the essence,” said Jennifer. “So we don’t have time to waste.”
And you can help by donating $15 in what is being called the ‘15 by 15’ challenge.
You can donate at Projectalive.org or text ALIVE to 91999.
Below is the story that NBC covered on Sebastian this morning: