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Lubbock teen recently diagnosed with rare disorder, community raising money to make his van wheelchair accessible

Joseph Urias, diagnosed with CDKL5 Deficiency Disorder, has not been able to leave his house often due to lack of viable transportation
Published: Sep. 16, 2021 at 5:59 PM CDT|Updated: Sep. 16, 2021 at 6:43 PM CDT
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LUBBOCK, Texas (KCBD) - Raven Fristoe’s son Joseph Urias was recently diagnosed with a rare disorder, CDKL5 Deficiency Disorder. It’s a genetic disorder which causes mutations in the gene responsible for brain and neuron development, and has affected Joseph his entire life. Now, supporters are raising money to help the family adapt.

At just two-months old, Joseph began having seizures. Since then, the symptoms have worsened while his family searched for answers. After 17 years, Raven says they have finally found what they were looking for.

“They did MRIs, they did EEGs and they always came back normal. We could just never find out what was going on, what was wrong with him. I finally got referred to this doctor from Fort Worth and they finally gave me my answers that I needed, thank God, because I have been waiting seventeen years for these answers.”

With constant doctors visits in Lubbock and across the state, Raven says the lack of wheelchair accessible transportation has been challenging. Every time Joseph needs to leave the house Raven has to help get him and his one hundred pound wheelchair into the car.

“It would be really important for me to modify my van because then I wouldn’t have to depend on someone else so much. He could be like everybody else, getting in the car with mom and going somewhere, even if it’s just to the store, just getting him somewhere. It would be amazing if I could just do that.”

That is why Lubbock couple Loren Milner and her husband Zach started a GoFundMe. Loren says when she heard Raven’s story she felt called to help. She says despite Joseph’s diagnosis, he is still just a kid.

“You look at Joseph and you might see someone that is different than other kids, but he has the same basic needs. He wants friends, he wants a hug, he wants somebody to talk to. He doesn’t get that exposure sitting in a house.”

You can donate to the cause at https://gofund.me/4e0ea3b1.

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