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El Paso mother aims to raise awareness about rare disorder with virtual run

carter and family
Miranda Castaneda
4-year-old Carter with his family.

EL PASO, Texas -- An El Paso 4-year-old has a genetic disorder so rare, only 275 people in the world have been officially diagnosed.

His mother is working to bring his diagnosis to the forefront while fundraising for a cure.

That includes a 4-year-old boy in El Paso.

"At about the age of one he hadn't began crawling yet," said Miranda Castaneda about her son, Carter. "He wasn't saying very many words."

Those are just a few symptoms of ADNP Syndrome. ADNP is a genetic disorder that can cause autism, delayed development in motor skills and even defects in the cardiovascular, neurological, respiratory or muscular skeletal systems.

Castaneda said with hours of therapy practically everyday, Carter has progressed rapidly but still relies on orthotic devices to stand and walk. Now, she is hoping you will run with Carter.

"It's called the ADNP Research Foundation Virtual Warrior Run. We consider all of our kids to be little warriors," Castaneda said, breaking into a smile. "So, there's no accountability. You can run, you can walk, you can sit on your couch and watch TV, you can swim laps, jump rope, the whole point of this run is that we are actually fundraising for a cure."

The goal is to raise $100,000 to fund a clinical drug trial that starts next month and will last a year.

Castaneda hopes this will ultimately lead to a cure.

"I'm very lucky. I get to hear Carter say "mom," I get to hear his sweet little voice," Castaneda said. "There are other children with ADNP Syndrome who have never spoken a word. And I'm very hopeful that this ketamine trial will provide parents with hope, it will give children a better opportunity to speak and it will give them a better quality of life."

The virtual run is on Saturday, July 11.

Sign up for the virtual run and read more about Carter's story

El Paso / Lifestyle / News

Stephanie Valle

Stephanie Valle co-anchors ABC-7 at 5, 6 and 10 weeknights.


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