Green Country family fears second daughter could be diagnosed with rare disorder

Posted at 8:11 PM, Mar 03, 2017
and last updated 2017-03-03 23:33:21-05

A 3-year-old little girl in Green County continues to fight a rare nerve and muscle disorder.

It's a story 2 Works for You reported back in November, when Kyra Bayliss was searching for a service dog.

The family, now facing an even bigger obstacle as they fear another daughter faces the same diagnosis. But the family is learning to cope.

"We celebrate every little victory every time," Jazz Bayliss, Kyra's mother said.

Now, as two daughters face a possible lifelong condition, the family is praying their third daughter isn't affected as well.

Kyra had a diagnosis doctors said didn't exist, which is now treated as a developmental coordination disorder affecting 1 in every 400,000 kids.

"She also has a vascular condition called a spontaneous vascular malformation," Bayliss said.

In her short life, Kyra has undergone 10 surgeries. Her mother said she can't create new muscle memory, and doctors said if the pattern holds, her physical strength could stay at the age of two.

"She wants to be a dancer, and I don't know that's going to be a possibility for her," Bayliss said.

For Bayliss, the pain of the unknown is sometimes unbearable.

"As a parent you have to grieve for your kid... for everything they're not going to be able to do."

And now, Bayliss said she's grieving for two.

"When the [physical therapist] said River might have the same issues, I grieved for several days," Bayliss said.

Her  2-year-old daughter, River, is now showing the same symptoms as Kyra. And the fact that it is genetic, is causing even more fear that a third daughter, 7-month-old Dany, could be at risk.

"The biggest fear is that we are not going to only have one kid with dyspraxia, we're going to have two, possibly three kids with dyspraxia with lifelong issues."

Physical therapy for the Bayliss girls is costly and insurance doesn't cover all of it. The family is also gathering funds to get the girls a service dog to enhance their quality of life.

If you'd like to help the family on it's journey, you can make a donation here.

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