Longtime advocate of special needs faced with her own health battle

POTW, Kelly Long, Autism Society of the Mahoning Valley

Kelly Long sat down with her parents in the living room of their home and laid out her final wishes.

Her parents would be the legal guardians of her two twin daughters and teenage son. If anything happened to them, her sister would be next in line.

Long hired an attorney to draft a will, special needs trust and guardianship documents to ensure her kids would be taken care of.

The 46 year old was on Cleveland Clinic’s transplant waiting list. She felt like time was running out.

Four years earlier, doctors diagnosed her with kidney disease. By 2023, her condition, the result of a bleeding disorder and high number of blood transfusions, worsened – from stage 3 to end stage kidney failure.

Even more grim: Less than one out of five people on the planet matched with her, so receiving a kidney that her body would accept was a long shot, according to her doctors. She continued on, though, enduring dialysis sessions three days a week, four hours at a time.

POTW, Kelly Long, Autism Society of the Mahoning Valley

She lost 25 lbs and grew frail. Then on Memorial Day 2023, Long received a call at 3 a.m. from the Cleveland Clinic.

She threw her bags in her car and drove 75 miles.

She received a kidney from a 17 year old teenager she knew nothing about.

“I am so grateful to my donor’s family,” said Long, who felt sorry for the donor’s death. “During the worst time of their lives, losing a child, they chose to think of others. They chose to donate their child’s organs and save multiple lives, my life included.

“They are my heroes.”

Long vows to overcome her challenges

While Long’s body has accepted the kidney, allowing her to regain weight, she’s struggled from survivor’s syndrome.

Maintaining her health, though, is taxing.

She told Spanning the Need that she makes frequent trips to the Cleveland Clinic and gets blood work drawn weekly.

During the first five months following her transplant, she made 60 trips to the Cleveland Clinic, driving 4,560 miles. She spent $1,500 in gas, $330 in tolls and $600 in valet services.

She takes 49 pills a day. Much of her medication isn’t covered by health insurance.

Yet she’s moving forward. Serving others.

“I still have a lot of work to do in the special needs community and I want to honor my donor by having the best life I can,” Long said.