Community rallies to help child fight rare brain condition

WILLARDS, Md. – A community continues to rally together to help a local child who is in the battle of her life, fighting a rare brain condition.

Sophia Jones, a 2-year old, is currently in New York receiving treatment for Chiari, a rare brain condition that causes the part of the brain that controls coordination and muscle movement, to push into the spinal cord preventing body parts from properly functioning.


Sophia’s condition wasn’t diagnosed for two years.

“March of 2018, Friday they did a sedated MRI.  That Tuesday she had brain surgery there was so much pressure on her brain,” said Sophia’s grandmother, Judy Jones.

Since Sophia’s diagnosis with Chiari, she has undergone four surgeries at two different hospitals in the past eight months.

Judy says she has seen the Willards community respond in force, with donations coming from locals, or even Judy’s workplace, Farmers Bank of Willards.

“And the community is just responding in mass.  These people in this area on the shore generally are just amazing giving people.”

“We did not expect it, or even really ask for it and they have been just amazing, they have gone out of their way to support us,” said Hannah Jones, Sophia’s mother.

Between hospital use, housing and parking, the bills pile up.  That’s why Farmers Bank of Willards will host a barbeque fundraiser next Saturday, November 17.

“I think it’s a testament of the fact that people around here care about people.  We help take care of our own.  When we know somebody is in a need, anything we can do to help raise funds, we’re going to help that family in any way,” said George Burbage, a fundraiser organizer.  “That little girl might be in New York, but we care about her here and we want to make that known to her.”

Sophia went without being properly diagnosed for two years.  Her family says it’s because the disease isn’t well known, and that symptoms overlap with other more common conditions.

They tell 47ABC they hope to raise more awareness for this disease in hopes of helping others.

If you wish to reserve your spot at the fundraiser, tickets are just $8, and you can get yours by calling the Farmers Bank of Willards at 410-835-2482.

Or if you want to help Sophia in her fight, you can donate to her go fund me page at Help Sophie Heal.

Categories: Health, Local News, Maryland