(WSVN) - Where most children will be playing and running around, this 6-year-old girl is battling a rare genetic disorder that is affecting her quality of life, particularly her motor skills.
David Garcia, a single father is deeply worried for his daughter Khole.
“It’s very hard, especially when you live by yourself. You don’t have nobody to talk. You have to do everything on your own,” said Garcia.
Khole wears thick glasses to help with rapid vision loss and to get around she must use a walker.
“It’s really clear you know by this time next year she is not going to be able to walk independently at least for long periods of time,” said Khole’s teacher, Tara Coogan.
Khole was a typical five-year-old girl, who could walk, read, and spell with ease just a few months ago. Shortly, after her birthday her father began to notice her gross motor movements began to deteriorate.
“In November it just started really changing,” said Coogan.
“The first time they told me it was this I said it’s not possible to happen to me,” said her father.
Khloe was diagnosed with Metachromatic leukodystrophy, a rare genetic disorder that affects the brain, nervous system, and motor skills. Persons diagnosed with Metachromatic leukodystrophy can experience loss of intellectual, thinking, and memory skills. In addition to, stiff, rigid, and poor muscle function along with loss of bladder and bowel function.
“There is no cure for this. Only treatment,”said her father.
Dr. Thomas Cassini works with patients diagnosed with leukodystrophy. He says it’s a fatal disease, but kids with it can live until their 20s or 30s if they are given a new treatment.
“In March, that is correct of this year, the FDA approved an autologous stem cell gene therapy treatment,” Cassini.
The treatment is expensive and only offered at a few hospitals across the country, which David is visiting to find the best fit for Khloe.
“Every single day I have to watch my daughter and I have to find out a way to stop this disease,” he said.
While the pair are facing a big challenge, they’re still celebratory moments that tugs on a parent’s heart strings. For David, it’s Khole’s graduation.
To see his daughter not only wear this blue gown, but to take a photo with her standing beside him, this moment means everything to him.
Hopefully, there’s many more graduations in the future.
“That’s my baby. I love her so much. I don’t want to think some day that I’m going to lose her. No, she’s everything to me.”
Doctors say it’s rare for insurance to cover the treatment and it could cost hundreds of thousands, if not millions of dollars.
Khole’s teachers have started a GoFundMe to help.
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