Terryville community supports boy with rare genetic disease - WFSB 3 Connecticut

Terryville community supports boy with rare genetic disease

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Terryville community supports boy with rare genetic disease (WFSB) Terryville community supports boy with rare genetic disease (WFSB)
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TERRYVILLE, CT (WFSB) -

Residents in the town of Terryville came out in droves to support a local family whose son is battling a life-threatening disease.

Darcy Gray said her 9-year-old son Christopher Gray was a happy second grader and a green belt in karate, but she said that all changed in 2016 when Christopher’s teacher noticed something strange about the child’s behavior.

Darcy said Christopher began using his hands to follow along when reading, followed by Christopher responding in mono-syllabic phrases such as ‘huh,’ more frequently.

“That was the worst night of our lives,” said Darcy, wiping away tears. “He was diagnosed with ALD and he’s been losing his ability to walk and see, he can’t eat anymore.” 

After that day, doctors said Christopher had 3 years to live. Adrenoleukodystrophy, or ALD is a rare, genetic disorder that impacts boys. Doctors told the Gray family it could have been prevented if caught sooner.

Family and friends held a fundraiser in Christopher’s honor on Sunday on the Terryville fairgrounds.

The fundraiser included a motorcycle ride and a show of classic cars, trucks, antique tractors and bikes.

“The money’s one thing but the most important thing is to show them the support they have,” said friend of the family, Rob Manzone.

“All these people are here for them.” 

Organizers said the most important part is to pray for a miracle for Christopher. They’re asking the community to do the same.

“Whatever earthly medicine says is not final until God says it’s final,” said Darcy.

Doctors in Connecticut now screen newborn boys for ALD. However, those screenings did not start until 2016, or 6 years after Christopher was born.

For those interested in donating, the Gray family said to send a check to the Thomaston Savings Bank in Terryville made out to Miracle for Christopher. All the funds raised will go to his medical expenses.

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