Grandma’s Mission Angels holds fundraiser for boy with rare disease

Pennsylvania
On Sunday, Grandmas Mission Angels held a fundraiser for a young boy battling a rare disease.
 
When the community heard that 7-year-old Ethan Szumetz was battling a rare disease, they came together to help his family pay for medical expenses and spread awareness.
 
“When I saw the picture of the toes online, there was no doubt in my mind based off of what I had read online and the symptoms. I knew this was the path we were going down,” said Tara Vaughn, Ethan’s mother.
 
Ethan was diagnosed in April 2017 with FOP (fibrodysplasia ossificans progressiva). Ethan’s mom says there is a trial drug available, but Ethan suffers from flare ups that cause his bones to lock.
 
“He’s not able to do any type of sports. Any type of activity because it can cause flaring in the body,” said Vaughn.
 
Experts said there are 800 cases in the world and approximately 300 cases in the United States. The cost to receive treatment is adding up, so Ethan’s family and friends are reaching out to the community to move forward with the next form of treatment.
 
“Just hope that everybody can support him, and he gets whatever treatment he needs from this,” said Mercedes Eichman, who came to support. 
 
If you’d like to help, visit their GoFundMe page here.

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