Port Richmond Girl Suffering From Rare Disease Needs Treatment - KMSP-TV

Port Richmond Girl Suffering From Rare Disease Needs Life Saving Treatment

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PORT RICHMOND -

This 7-year-old will touch your heart. She's suffering from a rare disease and needs life-saving treatment.

She has seizures and a series of mini-strokes. FOX 29's Dave Kinchen shows how you can help.

Kicking the soccer ball around with her dad 7-year-old Jenna Bayona looks like your everyday active kid that loves the outdoors, but violent seizure-like episodes can derail all of this fun. The last attack happened at school last month.

"It's scary. Real scary. The one time her whole left side of her face drooped. The nurse had to run into the hallway to help her, her whole legs went numb. She actually had to pick her up and put her on the table for a while," said Kristina Scott, Jenna's mother. 

Jenna was diagnosed with a rare illness called Moyamoya where certain brain arteries become blocked restricting blood flow.

"They said it means "puff of smoke" in Japanese and that it's more common in Japan," said Kristina said.

It has left this soccer-loving girl to be sidelined suffering several mini-strokes requiring many doctors' visits.

She has to take aspirin and blood pressure pills every day too. Doctors say brain surgery is essentially the only treatment available. They found a specialized team at Boston Children's Hospital, but the problem is cost.

"We have $500 a night co-pays for every stay. It's basically travel back and forth and being up there for the week. Hotel, stuff like that.

They started a page on gofundme.com looking to raise $2,000 to get her to Boston and have only raised a few hundred dollars so far.

"With everything being so last minute we really didn't have a chance to get everything together. They can't even give me any type of bill yet," Kristina said.

Jenna and her family are scheduled to visit BCH at the end of this month. If you would like to help them get there, log on to her facebook page.

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