WEST SENECA, N.Y. — A West Seneca couple is asking for prayers, support, and "positive vibes" as their toddler is expected to undergo a bone marrow transplant this month.
2 On Your Side first shared the story of 2-year-old Jack Fadeley, a dinosaur and swing-set loving toddler, in November. He was in need of a donor for a life-saving bone marrow transplant and a donor drive was held in his honor.
Fast forward to present day and Jack is expected to receive that life-saving bone marrow transplant soon.
Beth Fadeley, Jack's mother, wrote WGRZ's Melissa Holmes and said, "We are not permitted to know the identity of the donor. Per the policy of the process, we have to wait one year after transplant before we can ask for direct contact with the donor. Words really cannot do justice for the gratitude we feel for this donor. We will forever be humbled by the selflessness of this donor and of all those who have stayed by our side in support during this journey."
To see the original story from November, watch the video below.
Jack was diagnosed with the common respiratory virus RSV and an ear infection in September 2021. He was rushed by ambulance to Oishei Children's Hospital in Buffalo.
"He not only had RSV but he had pneumonia in both lungs, he was in septic shock and he had almost no blood levels," said Beth.
According to Jack's parents, because he could not catch his breath after being put on high flow oxygen, and his heart rate and respiration remained too high, he was placed on a ventilator. Shortly thereafter he began to decline and was placed on a second type of ventilator called an oscillator. The next day, because his condition had not improved as expected on the ventilator, the decision was made to give his heart and lungs a much needed rest so he was taken to surgery and placed on an ECMO machine, the highest form of life support.
"That's an option of last resort. You only have a one in two chance of coming off of it once they put you on it," said Jack's father, John Fadeley.
Fortunately Jack did come off of the ECMO two weeks later. In that time, a culture also came back positive for a bacterial infection.
Beth explained, "Once the bacterial infection cleared with antibiotics and the RSV virus shed, Jack's blood levels did not regenerate on their own indicating an underlying condition. Jack continues to receive blood and platelet transfusions a couple times a week and will continue to do so. His current running diagnosis is severe idiopathic aplastic anemia. There are a few remaining tests for other rare blood disorders that have not yet resulted, but regardless of those results, the treatment remains the same - a bone marrow transplant."
Finding a full bone marrow donor match, though, is like finding a needle in a haystack.
"As parents we only have a 1 percent chance of matching him and so we didn't. And if he had a sibling, which he doesn't, there's only a 25 percent chance of a match," explained John.
Friends arranged a bone marrow drive in honor of in early November.
"There is that one person out there that can make that huge difference," John said. "It's scary for people to think about doing a bone marrow donation. This is one of the few times in your life where someone can uniquely be a hero."
The Fadeley's are grateful for all who attended the bone marrow drive and those around the world who are on the bone marrow donor registry. That match could save their son's life.
Beth added, "Even though we are relieved and excited for this transplant to occur and hopeful for a successful transplant at that, Jack will still have a very long road ahead even after hospitalization and in addition to being hospitalized, at best, for several more weeks."
The family is asking Western New Yorkers and supporters around the world to play "Fight Song" by Rachel Platten on Thursday to send positive vibes to baby Jack. His father will be posting updates on Twitter, under the handle @ForTheLuvofJack.
To learn more about bone marrow donation, click here.