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patient story

Mikey Jones

rough start, bright future

Mikey Jones wants to be a NASCAR driver when he grows up— or maybe a country music singer. Or perhaps a sports broadcaster, or a mechanical engineer. For someone who has already overcome many challenges in life, anything seems possible.

Mikey was born in 2004 with a rare condition called VACTERL association. VACTERL causes multiple birth defects, which vary from person to person. Mikey’s affected his heart, kidneys, spine, digestive system and left arm. “Mikey was so sick when he was born that no one was allowed to hold him for 22 days,” says his grandmother, Lori Jones. “He had surgery to correct a bowel obstruction at two months old, and then he had open heart surgery two months later.”

These surgeries corrected major problems caused by VACTERL, but other symptoms persist. The most obvious is Mikey’s left arm, which ends at the elbow with a partial hand. “All of his problems are on his left side,” Lori says. “His left kidney is a little smaller than his right. His left eyelid sometimes droops so much that the eye doctor has to do a procedure to fix it. One of his heart valves is leaky, his airway is affected, and his digestion isn’t always good. Spine problems make him hunch over sometimes, and he limps a little, too. Over the years, he has had more than a dozen surgeries and procedures related to VACTERL.”

No holding back

With all of these medical issues, you might expect Mikey to feel a little sorry for himself. Quite the opposite! He works hard in school, and he loves to play football, basketball, baseball and soccer, as well as run track and race go-karts. “My coach says that if I had a normal left hand I would be better at basketball, but I can still shoot from half court,” Mikey says. “I’m pretty good at football, too. People don’t expect that, or expect me to run as fast as I can run.”

And he can run fast! Last year, as a sixth grader, Mikey wowed his family and friends with a great track season, which included competing in the 100-meter dash, 200-meter dash and relay events for his Valerie Elementary School team.

A new life

Mikey depends on several pediatric specialists at Dayton Children’s to provide ongoing care for his medical needs. His doctors include Ravindhra Elluru, MD, PhD, pediatric otolaryngology; Michael Bloom, MD, pediatric ophthalmology; Michael Bates, MD, pediatric gastroenterology; and Michael Albert, MD, pediatric orthopaedics. “Those doctors make me laugh a lot, and I make them laugh, too,” says Mikey. “Dr. Elluru  always asks me if there is a young lady in my life, and I always say no. Although I don’t think I would tell him even if there was! He likes giving me a hard time.”

Laughter is good medicine for Mikey, whose family life has presented challenges of a different kind. At Christmastime in 2013, he and his three younger siblings were removed from their parents’ home due to neglect. Their living conditions were unsafe, and they had not been to school (or a doctor) for over a year. Lori and her husband, Don, stepped in and were granted full custody in 2014.

Dayton Children’s pediatrician Laura Hutchison, MD, played an important role in addressing the children’s health needs as they transitioned to their new life. “I got tubes in my ears, since I had been getting a lot of ear infections,” Mikey says. “Dr. Hutchison also ordered some tests to make sure that VACTERL wasn’t causing hidden damage. She is always so nice and explains what is going on. I think I’m doing pretty good—for one thing, I’ve gained 40 pounds in two years, which I really needed.”

Mikey says he doesn’t think about VACTERL very often, and he is thankful to be safe in his grandparents’ loving home. “I try to put the past behind me, and now I am excited about being an ambassador for Dayton Children’s,” he says. “I still have my challenges, but I would like to give other children some hope and brighten their day.” 

 

Mikey is a 2017-2018 ambassador for Dayton Children's. Ambassadors share their story throughout the community to help raise money and support for Dayton Children's. For more information about the ambassador program please contact 937-641-3666.