By Ashley Peterson-DeLuca
Like most 6-year-olds, Abe Kuhnert-Hill loves pizza, ice cream and his stuffed Pikachu, which he carries everywhere he goes. When he isn’t doing his homeschool classes, Abe sings, dances and plays with his 2-year-old sister.
“His smile captures the heart of anyone who meets him,” says Nikki Hill, Abe’s mother, who lives with her two children in Glenwood, Iowa.
Abe’s joy hasn’t been dimmed by having to spend much of his young life in the hospital. He has Fanconi anemia, a serious and rare blood disorder that affects his bone marrow.
“His illness has impacted every one of his organs. We were in the NICU and the PICU for much of his first few years,” says Hill. “He’s my miracle baby.”
Doctors identified that he had a heart abnormality during a routine pregnancy ultrasound, but they didn’t know the full extent of his disorder until after he was born. Soon after birth, Abe suffered from multiple cardiac arrests, including one where he was out for 16 minutes, causing brain damage. When their doctor couldn’t find the reason right away, they had to send a blood sample to specialists out of state to get his diagnosis.
Hill reports that Abe has had over 80 emergency room and hospital visits and 30 surgeries. Currently, to continue to thrive, he must go in every other week to get blood and platelets transfusions.
“You can tell when he needs a transfusion. He gets dark circles around his eyes, bruises constantly, is lethargic and won’t play outside with little sister,” says Hill. “It is hard to see him not be the 6-year-old he wants to be.”
Despite having sat through dozens of Abe’s major surgeries, Hill was terrified earlier this year while waiting for a transfusion. The nurse told her that they couldn’t find a unit of platelets that matched Abe’s type because of a severe blood products shortage. Due to a rise in the number of trauma cases, organ transplants and elective surgeries that were put off because of the pandemic, the current blood supply isn’t enough to help everyone who needs it. They waited at that hospital for few more hours until Abe was finally able to receive the transfusions he needed.
“Blood donation really does save lives. When you give blood, you’re contributing to helping thousands of people who need it,” says Hill. “It’s hard to understand where it is going—and how much of an impact it has—until you see first-hand how it impacts someone you love.”
Hill has also dedicated her professional career to helping others through blood donations.
“Abe has given me a better outlook on life and made me stronger,” says Hill. She trained and got a job as a phlebotomist for the Red Cross, working in blood donation for three years. Now, she’s working at the Red Cross as the administrative assistant for the Regional Donor Services Executive, which lets her spend more time with her kids.
“The Red Cross has blessed me. I can’t thank them enough, not just for the job, but also for helping my son,” says Hill.
Because of his anemia, Abe is at high risk of developing a type of leukemia called Acute Myeloid Leukemia. He is currently in bone marrow failure and needs a bone marrow transplant to extend his life. Recently, they received the good news that a donor has been identified. Starting mid-September, Abe will be admitted into the hospital to start the bone marrow transplant process.
Hill says, “If I could meet the donor, I would thank them a million times. They have given me more time with my son because of their selfless act. I would tell them, ‘You saved a little boy’s life.’”
The Red Cross continues to experience a severe blood shortage. You can help by making an appointment to donate. Call 1-800-RED CROSS or go to RedCrossBlood.org to find opportunities to donate near you.