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Benefit ride organized to help child diagnosed with Chiari Malformation

Emmalyn Freeze was diagnosed with the cerebral genetic disorder when she was three years old.
Published: Jul. 15, 2021 at 6:40 PM CDT
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MOUNT MORRIS, Ill. (WIFR) - Numerous surgeries from doctors nationwide can get expensive for one family with a daughter who’s battling a genetic brain disorder, but a benefit ride this weekend could help them pay less out of pocket.

Twelve-year-old Emmalyn Freeze of Mt. Morris found out at the age of three she was diagnosed with Chiari Malformation, a disease that forces some of her brain into the spinal cord, blocking the flow of spinal fluid, which debilitating headaches and other physical problems. She received an MRI to check for it after her brother Colton had the same disease.

“I think I’ll get better. I mean I know I’ll take time, but I always know I’ll get better,” said Emmalyn.

Freeze has underwent a total of 43 surgeries. She’s traveled by car with her family to get medical help from a specialist in New York. Now she and her family take a four-day trip to California to get treatment from a specialized medical professional who deals with CSF leaks. Emmalyn can’t go on an airplane because she can get headaches from this disease, and the air pressure is too much for her head.

“When they were diagnosed, they said it was very rare. And then when i started joining like the Facebook groups and stuff like that for Chiari, you realize it’s not as rare as you think it is,” said Emmalyn’s Mom Stephanie Freeze.

Because of all the traveling and medical expenses, it has taken a serious financial and emotional toll on her family. Now thanks to second cousin Monica Miller, a benefit ride will take place Saturday in Mt. Morris to help the family focus on fighting Emmalyn’s disease, an not their bills. The Mt. Morris Fire Department will bring a vehicle with an intercom so Emmalyn can tell riders to start their engines at 11:00 a.m.

“She smiles through everything. She tries to see the best in everyday even though she’s in a lot of pain, but she does the best that she can to get through everything,” said Stephanie.

Emmalyn said this doesn’t stop her from having a positive outlook on life, and the support of friends and loved ones means so much to her and gives her the strength to keep fighting.

“They help me a lot and the thing is they still... I don’t know how to explain it. They’re just still really good friends even though I’m not always here,” said Emmalyn.

The benefit ride will start at eleven at the Idle Hour Bar and Grill in Mt. Morris and includes several stops around Ogle County. Several activities will follow around 2:00 p.m., including a a silent auction and 50-50 raffle. 100% of the proceeds will go toward helping the Freeze’s pay for its medical and travel bills.

Following the benefit ride, the freezes plan to take a four-day road trip to California. Stephanie said they have been in the sunshine state all but 73 days this year.

Those interested in learning more about Emmalyn’s journey can go here. There’s also a GoFundMe set up, which you can donate to using this link.

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