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Toddler in need of life-saving transplant; 'Good Neighbors' needed to donate bone marrow

Friends are holding a bone marrow drive Saturday, Nov. 6, in honor of Jack Fadeley of West Seneca who is fighting for his life after complications from RSV.
Credit: Fadeley Family
The parents of 2-year-old Jack Fadeley of West Seneca are asking for thoughts and prayers as he undergoes a life-saving bone marrow transplant.

BUFFALO, N.Y. — (Editor's note:  The family currently does not have a donation page set up.  Any sites asking for donations have not been authorized by the family or benefiting them)

Jack Fadeley is a dinosaur and swing-set loving toddler who turns 2-years-old on Friday, Nov. 5.

"He's just a very loving and energetic little boy," said Beth Fadeley, Jack's mother.

But six weeks ago all of that changed and now Beth Fadeley and her husband John are desperately searching for a "Good Neighbor" who will help to save their toddler's life. 

Jack was diagnosed with the common respiratory virus RSV and an ear infection on Sept.17. Just three days later, 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 Fadeley. 

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 John Fadeley, Jack's father.

Fortunately, Jack did come off of the ECMO two weeks later. In that time, a culture also came back positive for a bacterial infection.

"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," Beth Fadeley explained. "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 Fadeley. 

Friends have arranged a bone marrow drive in honor of Jack on Saturday, Nov. 6, from 10 a.m. to 4 p.m. at The Wings Meeting Place, at 3964 California Road in Orchard Park. 

Anyone between the ages of 18 and 40 who meets the health guidelines and comes to the drive to be added to the registry with a simple cheek swab, won't just be checking to see if they're a match for Jack, but also for anyone else in need of a bone marrow transplant. 

"The optimal situation for the goal of a successful bone marrow transplant includes, but is not limited to, utilizing a donor who is a FULL HLA (human leukocyte antigens) match," explained Beth Fadeley. "HLA are proteins or markers on most cells in your body. Your immune system uses HLA to see which cells belong in your body and which do not."

For more information about the bone marrow drive in honor of Jack Fadeley, go to:  https://my.bethematch.org/luv4jack.

See information about making a bone marrow donation below:

"There is that one person out there that can make that huge difference," said John Fadeley. "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."

To say the past six weeks have been emotional and difficult is an understatement, but the Fadeley's are grateful for the support they've received.

"We have been and continue to receive an outpouring of love, support and prayers from family, friends, our employers and coworkers, Jack's daycare, prayer groups, associations of family and friends," said Beth Fadeley. "In addition, the staff and medical professionals at the hospital where Jack is receiving treatment have been outstanding with their care of Jack and with us as a family. We have been very blessed in this way and our very thankful for everyone whom have been there for us and Jack."

For more information about the bone marrow drive in honor of Jack Fadeley, go to:  https://my.bethematch.org/luv4jack

Please review the health guidelines for potential bone marrow donors: 

If you know of a person or group who should be featured as "Good Neighbor" on Channel 2, email Melissa.Holmes@wgrz.com. To see past "Good Neighbors" stories, check out the videos below: