17-year-old diagnosed with CDKL5, Lubbock community starts GoFundMe

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LUBBOCK, Texas — Joseph Urias, a 17-year-old boy, was diagnosed with CDKL5 deficiency disorder, which deals with a person’s chromosomes, four months ago. Now, one Lubbock couple set up a GoFundMe account to help with a modified van and medical stroller.

Raven Fristoe, Joseph’s mother and full-time caregiver, said there is no cure.

“Every day that I have with him is a blessing to me,” Fristoe said. “The only thing we can do is put him on medication and hope for the best that one day we will get a cure for this.”

Joseph and his family have traveled all over Texas to see doctor after doctor, leading them to decide to settle in Lubbock.

“We were traveling every week to Lubbock, El Paso and Fort Worth, and just health-wise and bill-wise, it was just smarter to move this way.” Fristoe said, “He gets everything between neurology. He does have seizures. He does tract and feeding tube. He does orthopedics for his shoes and stuff.”

After settling in Lubbock, Raven found the support she thought she would never have, Zach and Loren Milner.

“We would talk at work, and she started to talk about Joseph, and I asked questions, and as soon as I found out the struggles, she went through with loading her son up in a van.”

The Milner’s then created a GoFundMe account in hopes of making a big difference.

“The barrier found is that he’s not able to participate with different family functions, and that was the barrier, and we are really wanting to push Joseph to be included in any events that the family does, and it’s important that he gets to participate in things that are meaningful to him.” Loren Milner, the organizer of the GoFundMe, said.

Joseph’s mother says she will always be team Joseph all the way.

If you would like to help Joseph and his journey to inclusion, you can donate to their GoFundMe.

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