Lifelong Genesee County resident Melinda Stedman was prepared for late night feedings and diaper changes with her son JP, but not for what the 9-month-old must now endure.
“It’s something I never imagined I’d have to do,” she said Thursday while waiting for her son to wake up from his nap. “I didn’t think I’d have the strength, but you find it. It’s sad because he’s not doing the normal things and having the normal milestones. We’re celebrating the tiny things.”
JP, short for Joseph Paul, has a rare liver disease. It was discovered through a liver biopsy in January, and has put the Stedman family on a “rollercoaster” of emotional and medical ups and downs ever since. Their ordeal began with an ultrasound in which doctors could not find the little guy’s gallbladder. That led to the diagnosis of Biliary Atresia, and the need for a life-saving liver transplant.
When JP doesn’t have cholangitis, Stedman — a stay-at-home mom with two other children — feeds him a special formula to help him gain weight, and observes his four weekly therapy sessions (two each for physical and occupational therapies). When he does have cholangitis — an inflammation of the bile duct system — he has to go into the hospital for a picc line, or long catheter inserted into a peripheral vein for longer term use. His mom has learned how, and adapted to, maintaining, flushing and administering fluids to his IV line at home.
While Stedman and her husband Paul, a New York State trooper, wait with hope for a suitable liver donor, they are also anticipating the estimated $50,000 to $80,000 needed for the transplant surgery at Children’s Hospital of Pittsburgh, and the related costs of housing accommodations for them to stay with him throughout the two to three months of post-surgery lab and clinic treatments.
A GoFundMe page has been set up to help offset those expenses. The page also has a more detailed explanation of his condition and all that 9-month-old JP has gone through to date. The fundraising goal is $50,000. There are also sales of JP T-shirts and keychains (handmade by the 11-year-old daughter of a friend who likes to work with clay and created a green clay ribbon).
Ever since she learned of the Stedman’s plight, friend Joanne Smith and her husband Dan have jumped on board to help. Mrs. Smith has not only known the couple a long time, it was in her criminal justice class where they first met.
“We’re all together for two years. (After graduation) I hear from all of them about people getting married and babies being born,” Mrs. Smith said. “When I heard last January about JP … Dan and I are retired, and we said ‘what do you need?’ When he was diagnosed in January, we were hoping they could avoid a transplant. It’s just been a rollercoaster. You think you’re out of the woods and improving, and then he’s back in the hospital.”
The sad paradox about a transplant, she said, is that everyone wants JP to remain strong enough to survive the transplant, but the more critical his condition gets, the higher he climbs on the list of priorities. Some people have inquired about becoming a donor, however, the list of requirements is very demanding and the process is not an easy one, Mrs. Stedman said.
“I just met with the living donor coordinator,” she said, listing some requirements of being 18 to 55, blood type O or B, generally healthy with a BMI of 30 or less and a non-smoker. “People have to go fill out an application online.”
A donor outside of the immediate family would be ideal, Mrs. Smith said, as the parents will need the physical strength to care for JP, 3-year-old Zachary and 5-year-old Savannah.
Given his countless needle pokes and jabs and other medical tests and treatments, including an intravenous
tube, JP has been “a very happy baby,” especially when home with his siblings, his mom said. And there are those days when the frail tyke can bear weight on his legs and lift food up to his mouth, she said.
“I learned to celebrate those small victories,” she said. “My faith has gotten me through it.”
To read more about JP’s life and battle and/or to donate, go to:
http://www.gofundme.com/f/jps-liver-transplant-expenses?qid=5ec9ad887ec101894c8cfbe347057ea7
or check out his Facebook page:https://www.facebook.com/jpsfight
For anyone interested in applying to be a potential donor, go to the University of Pittsburgh Medical Center’s site: LivingDonorReg.UPMC.com
Photos submitted by Melinda Stedman. Top photo: Nine-month-old JP Stedman cracks a smile despite enduring medical treatments as he waits for a liver transplant donor.
Siblings Zachary and Savannah Stedman spend cherished time with younger brother JP while he's home from the hospital.
Nine-month-old JP Stedman is shown in an all-too-familiar scenario with an IV tube at home while he battles a liver disease and waits for a donor for his liver transplant.
