From the Rockford Register Star | Chris Green: 815-987-1241; cgreen@rrstar.com; @chrisfgreen
ROCKTON — One donor down. One more needed.
Joe Beard, the Rockton man in need of a new liver, kidney and bone marrow, said one organ donor has been found. And he didn't have to look far.
"I got approved to be his liver donor," said Joe's wife, Hayley Beard.
Joe Beard, 41, was diagnosed in 2018 with a rare genetic disorder called STAT3 gain of function, a multiorgan autoimmune disease.
At the time of his diagnosis there were only 28 known cases. Even more rare is the number of hospitals in the country willing to perform the multi-organ surgery Beard needs.
The University of Pittsburg Medical Center, one the country's leading hospitals in performing organ transplants, accepted his case. Because of the distance between Rockton and Pittsburg (over 500 miles), Beard cannot use cadaver organs because he can't get the hospital fast enough.
'This is going to kill me': Rockton man with rare genetic disorder in need of 2 live donors
For his case, doctors will have to use live donors.
To help with travel expenses and bills, the Beard's church, Roscoe United Methodist Church, 10816 Main St., is organizing a festival from 11 a.m. to 4 p.m. May 7. The event will include a $10 lunch, music, silent auction, firetrucks, bouncy houses and other activities.
All proceeds from the fundraiser will be split between the Beards family and the family of April Doubleday who is fighting Ehlers Danlos Syndrome, a rare genetic disorder characterized by loose joint to hyper joint mobility and life-threatening complications.
Going into surgery together
For logistical and childcare reasons, the Beards were hoping two donors could be found.
"I won't be able to be his support person for at least eight to 10 weeks," Haley said. Once the surgery is performed, she will be healing, as well. "So, we'll need his mom to be out there."
The couple will be leaning on friends to care for their daughters, Elsie, 6, and Molly, 5.
Hayley will be able to donate up to about 60% of her liver, the only organ in the human body capable of re-growing. Liver regeneration after donation takes six to eight weeks.
As for the still-needed kidney donor, the Beards expressed tempered optimism.
The fact that people have two kidneys and can survive just fine with one does not mean it's easy to find a donor.
"It's more than just matching blood type," Joe said. "There's all these antibodies and then subtypes of subtypes. And you have to have all of them match."
The kidney donor also would serve as the bone marrow donor.
"So, they want to make sure everything lines up," Haley said, "because otherwise he would be more apt to reject the kidney."
How to help
Register to be a potential donor at livingdonorreg.upmc.com. Type Joseph Beard in the “Donation to” spot.
To help the family with travel and expenses, donations can be sent to:
Roscoe United Methodist Church
C/O Joseph Beard Transplant Fund
10816 Main St.,
Roscoe, Illinois, 61073
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