Brothers Tag, 6, and Trey, 9, may not be related by blood, but these two have a special bond that most don’t — both have hemophilia A, a rare bleeding disorder that can often cause spontaneous and hard to control internal bleeding.
“There’s no cure yet, but they can live very typical lives,” the boys’ mom Monica Poynter told TODAY Parents. “They’re active, wild boys. They ride their bikes, they chase each other, they ride four-wheelers, and they’re excellent swimmers. We don’t let them do contact sports; that’s just a little bit too much, and if they're playing with friends, I always make sure their parents know to have their kids not be so rough with mine.”
Monica and her husband, Josh, were not familiar with the rare bleeding disorder when she delivered Tag at their local Bowling Green, Kentucky, hospital.
“Our local hospital was not equipped to diagnose hemophilia,” Josh Poynter shared. “We didn't get a handle on that until we were flown to Louisville to explain to us what the problem was.”
The Poynters said that doctors explained the prognosis to them and shared important resources, but the first-time parents still felt uncertain.
“It was very overwhelming,” Monica said. “You're trying to be first time parents and then trying to keep your child alive with a bleeding disorder.”
Despite challenges presented by Tag’s condition, the Poynters were eager to grow their family.
“Once we got a handle on everything, [we realized] having a child was the greatest experience,” Monica said, sharing that the couple’s infertility struggles led them to pursue other options for more children.
The couple had just decided that a foster-to-adopt scenario was not the right fit when an issue of HemAware, the National Hemophilia Foundation's magazine, arrived in their mailbox.
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“It featured a family who had adopted a little boy from China,” Monica shared, adding that it felt like an ‘ah-ha’ moment. “We read the article and there were some contact names in there and it all happened very fast.”
In January 2020, the Poynters traveled to China to bring home Trey, who had spent much of his life in and out of hospitals without preventative care for hemophilia.
“Trey did not have access to preventative medication before his adoption,” Monica explained, sharing that preventative medication is the best course of treatment for avoiding life-altering situations.
“He had a bleed so bad in his knees he couldn’t walk," she said. "He had suffered from intracranial hemorrhages, gastrointestinal bleeds, [and was] hospitalized for weeks at a time, because he wasn’t given preventative care, only as-needed.”
Even though he traveled home in a wheelchair, Trey, who had spent most of his life thinking no one else in the world had the same disorder as him, immediately began the bonding process with Tag.
“They fell right into typical brothers and their roles as big brother and little brother,” Monica said. “Even though they didn't speak the same language at first, it was not an issue. I tell people — love is a universal language and it worked for us. Sometimes Tag will still play the role of translating for him.”
Today, both brothers have a new routine of taking the same treatment together — a shot of Hemlibra administered as a shot into the back of their arms by their parents. Prior to treatments like Hemlibra, bleeds could only be managed once they started and medication required being administered directly into a vein.
“We’re hoping to get them to do it eventually,” Monica said. “They’re not crazy about the idea of poking themselves yet.”
The Poynters shared they feel very blessed to experience parenthood as both biological and adoptive parents.
“It’s a challenge, but it's totally worth it to give a child in need a chance to have a long, loving, typical life,” Monica said. “You will absolutely change the child’s life, but also your own.”