FAIRFIELD — Boyd Hatch is like many other goofy 11-year old boys - loud, excited, and playful. He’s captured the hearts of almost every resident in the town of Fairfield. He’s also got one of the rarest genetic conditions on the planet.
Dubbed NEXMIF, XLID98, or KIAA2022, it’s a disorder which keeps the brains nerve cells from growing healthily, stunting the neuron connection. It is directly implicated with the X chromosome, making it more prevalent in males.
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This presents itself in symptoms of intellectual disability, autism, epilepsy, and more. It’s so rare that it affects less than 200 people in the world, and fewer than 20 in the United States.
“It affects the whole body. So so he's just motor skills and everything is just delayed and behind,” says Boyd’s mother Maren.
Not only is the condition rare, but it’s only been recently discovered. The oldest known individual with the disorder is 25 and lives in Canada. He’s used as a benchmark for studies on the condition.
So far, studies have suggested NEXMIF has no bearing on life expectancy.
Unfortunately, the condition does cause muscles and bones to gradually grow weaker, and all those afflicted are wheelchair-bound by the age of 13.
“His muscles and bones and kind of giving out. And so we are preparing for a wheelchair and making our home wheelchair accessible,” says Maren.
In order to help achieve their goal of wheelchair accessibility, friends of the Hatch’s are planning a ‘Glow Run’ fundraiser for the family at the Fairfield golf course.
“This community is wonderful because people are so giving and so wonderful and love Boyd, they support Boyd,” says Maren.
The fundraiser be at the Harvest Hills Golf Course in Fairfield on Saturday, May 10th. Registration for a 5k begins at 8pm and the run begins at 9pm. There will also be a raffle, live music, food, activities and more throughout the evening.
Businesses interested in sponsoring a raffle basket, and those wishing to contribute financially are encouraged to contact Cambria Giles at 406-799-0771 or Amanda Klinker at 406-781-5654.
