Noah was diagnosed with cystic fibrosis at five months old. Now, at age 10, he needs a new liver and lungs. His two aunts have reached out to the public for help.
Meet Noah.
He’ll be 10 years old on August 10, 2018. And he’ll celebrate another milestone that day: fighting cystic fibrosis for a decade, a condition he was diagnosed with at five months old. Medical obstacles began around his second birthday and have been frequent ever since, with the worst-of-the-worst issues starting around a few weeks ago.
In addition to the gravity of this disease, he’s also battling liver cirrhosis, portal hypertension and esophageal varices, causing him to need a triple-orange transplant. This includes a new liver and new lungs.
While the severity of his current state is difficult to stomach and imagine, he has two superstar women fighting in his corner: his great aunt, Tabitha McFall and his aunt, Victoria McFall. Due to recent complications that have impeded the process of getting on the transplant list, this courageous twosome decided to start a fundraising and social media campaign to ensure they’re financially prepared for the next steps in his battle. As of press, it has raised $65,000 of their $75,000 goal.
As Tabitha explains, once the current infections in his lungs have healed, he’ll begin the pricey process of moving forward. “While this is being resolved, the plan is to take him to surgery every four weeks to prevent any life-threatening GI bleeds. And if he does have the bleeds, he gets blood transfusions, which require him to be flown from Asheville to Chapel Hill to stop them.” They’ll make another flight the moment they receive a call there is a donor available.
Why so many complications? Victoria explains his particular case of cystic fibrosis is to blame. She says many of his issues are so rare, the National Institute of Health has taken him on as a case study to examine his conditions. While Noah is a special case, allergist, internist and chief medical officer of EHE Dr. Tania Elliott says cystic fibrosis happens in 1 of every 2 to 3,000 births, making it one of the most common genetic diseases impacting children. “The disease makes you predisposed to infection, and leads to an inability to clear mucous, which also becomes very thick. Your body also produces sweat that is very high in chloride levels, which is how the disease is diagnosed,” she explains. “The major organs affected are the lungs and sinuses, and people are very susceptible to certain kinds of bacterial infections. It can also impact the liver, pancreas, musculoskeletal system, the gut, and cause blood clots. The degree of the illness depends on what genetic mutation you have.”
Even with his difficult state, Tabitha and Victoria aren’t giving up—and they vow to forever be his advocate. As Victoria wrote on a Facebook post that’s now been shared 205 times: “I want so many people praying and advocating for Noah that when he goes to sleep at night he can rest easy knowing there are people fighting battles for him even when he sleeps. I want his story shared so many times that people all over the country and not just our town know how hard Chapel Hill, the NIH, and my mom have worked to save him—I want the parents of kids like Noah to know that there are life saving resources here even if they haven’t had much luck elsewhere. Every kid who is fighting for their life deserves to have the prayers and support from as many people as humanly possible.”
You can donate to Noah’s campaign here.
This article originally appeared on Parents.com.
