A rare friendship that led to curing a rare disease
We have all heard about friendship being powerful. But does it have the power to save lives? Apparently, ten-year-old Dylan Seigel has similarly strong friendship with his best friend Jonah Pournazarian.
Jonah suffers from a rare, incurable disease which prevents his liver from storing and releasing glucose. Dylan learned about this four years ago when the boys were just six. He also got to know that the doctors need a lot of money to find a cure for Jonah’s condition. The only treatment currently is to consume cornstarch every three hours.
Dylan expressed the wish to help. However, he didn’t got the traditional route of organizing a bake sale or start a lemonade stand. Instead, he sketched and came up with a book in a matter of hours. His parents helped print the handwritten and illustrated book. Soon, word about his touching gesture spread. It also got people talking about the rare, and until then little known, disease.
Dr David Weinstein is a leading expert on GSD treats Jonah. He is grateful to Dylan’s initiative which has raised a million dollars in three years. Speaking about the little boy’s efforts, he said, “‘He’s raised more money for this disease than all the medical foundations and all the grants combined. Ever.”
Dr Weinstein’s team is not on the verge of starting clinical trials for a possible cure of the disease. The gene therapy they have developed has proved in improving the quality of life of GSD patients.
While the cure could be revolutionary for medical science, Dylan is happy to have helped his friend. The two boys have even started planning activities to do when Jonah gets cured.
The world is full of such little yet overwhelming wonders as Dylan and his friendship with Jonah. You can help someone in need, too. Come over to Crowdera to find people who need help. Or you could start fundraising for someone in similar difficulty.