Parents Cope With Child's Rare Disease

Doctors say this child has only three years to live.

There are only 300 children affected by Cockayne Syndrome world wide, and there is a case right here in west Texas. A precious four-year-old girl named Grace.

Before Devin and Stacy Register decided to get married, there was already talk of someday having a baby of their own.

"Even dating, we were talking about what we both want in life and that's what we both wanted," Devin Register said, "Is to have a child."

Little did they know, they both had a specific gene that caused a rare disease.

"We always thought, how did we find another person that would be a carrier and end up with a child like this," mother Stacy Register said.

4-year-old Grace Rose was diagnosed last year with a disorder called Cockayne Syndrome.

The symptoms are neurological delays, premature growth and a shortened lifespan.

In fact, the doctors gave her only 4 to 7 years to live.

"For months I cried everyday," Stacy said. "After you get past the fact, then you realize you live every day like it's their last."

Grace has had multiple surgeries in her life, and small tasks like sitting her up and feeding her are difficult.
Still her dad says it's worth every trial.

"Even after the heartbreak that we are going to have," he said, "It would still be worth it."

Stacy says they want to raise funds to go towards the organization Share and Care Cockayne Syndrome Network. The non-profit group helps families and children through support, research and education.

"No matter how small it is," she said, "Clapping two blocks together, saying 'ma', smiling; you memorize it."

To learn how you can donate toward research CLICK HERE.

"Children grow up fast whether they have a syndrome or not," Stacy said. "Love them while you can, everyday is precious."

The first ever walk for Cockayne Syndrome will be next Saturday, October 2 at one of Graces favorite places, the University of Texas Permian Basin duck pond.

Registration starts at 9 a.m.

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Tags:

• Cockayne
• Syndrome
• Devin
• Register
• Stacy
• Grace
• Rose