A Pennsylvania teen waiting for a small bowel transplant is participating in 24-hour video game fundraising marathons in which he live streams himself playing games and asks for donations for his hospital.
Luke Maeding, 18, from Nazareth, was born prematurely and has had to overcome many medical challenges ever since.
He suffers from a congenital lung disease, so he underwent a double-lung transplant in 2010 – but, one year later, his bowel started failing.
Luke says that he’s often in pain and spends his time playing video games to get his mind off it, KDKA reported.
As he waits for a small bowel donor at Children’s Hospital of Pittsburgh at the University of Pittsburgh Medical Center (UPMC), Luke has created a video game fundraiser to raise money for the hospital’s organ program.
Luke Maeding, 18, from Nazareth, Pennsylvania, was born 26 weeks prematurely. Pictured: Luke in the hospital
Luke (left and right) was soon diagnosed with child interstitial lung disease, which left him unable to breathe without an oxygen tank. In August 2010, he underwent a double lung transplant, and his intestines began to fail one year later
Luke was born at 26 weeks and spent three months in the NICU at St Luke’s Hospital in Bethlehem, according to a UPMC blog post.
He was a foster child of his now adoptive parents.
From the moment he was born, Luke had lung problems and doctors determined it was because his lungs had failed to mature. As he grew, his lungs didn’t.
He was diagnosed with child interstitial lung disease (chILD).
It is an umbrella term for a group of rare lung diseases that reduce blood oxygen levels and decrease lung function, according to the National Heart, Lung and Blood Institute.
These diseases either directly damage or damage the tissues surrounding the alveoli – the tiny, elastic air sacs in the lungs – and the airways.
Treatments including corticosteroids to reduce lung inflammation, breathing devices and bronchodilators to relax the muscles around the airways.
In severe cases, when other treatments haven’t worked, a lung transplant is necessary.
Luke and his family met doctors at Children’s Hospital of Pittsburgh, who said he needed a transplant, but delayed it in hopes his lung tissue would begin to grow.
However, by 2010, the then-nine-year-old was confined to a wheelchair and was on constant oxygen, according to the blog post.
He says he’s often in pain and plays video games to take his mind off of it. Pictured: Luke playing video games in a car
Luke (pictured) was diagnosed with chronic intestinal pseudo-obstruction, which doesn’t allow food, fluid and air to move through the stomach and intestine
‘We did his lung transplant for his quality of life,’ his mother, Heather, said, according to the blog post.
‘Even though he was alive, he wasn’t really living and he knew that. He could only watch his brothers and sisters play.’
He underwent the six-hour operation double lung transplant at Children’s Hospital of Pittsburgh of UPMC in August 2010.
While his new lungs have allowed him to walk, run and play, his intestines have been failing for years.
Luke suffers from chronic intestinal pseudo-obstruction (CIP), which is a rare gastrointestinal disease.
Problems with intestinal nerves and muscles prevent food, fluid and air from reaching and moving through the stomach and intestines.
Sufferers experience symptoms of an intestinal blockage are experienced even though there is no physical blockage.
Because of this, Luke is not able to eat any food and is on 24/7 IV nutrition.
About 100 new cases of CIP are reported in children in the US every year, but it often goes undiagnosed, according to the National Organization for Rare Disorders.
But while he waits for a donor, Luke is raising money for the hospital with a campaign called Extra Life gaming, KDKA reported.
He is currently awaiting a small bowel transplant at Children’s Hospital of Pittsburgh at UMPC. Pictured: Luke
To raise money for their organ program, Luke has created a 24-hour video gaming marathon in which he live streams himself playing games and asks for donations. Pictured: Luke
Groups or teams get together and play games in a 24-hour marathon, during while they live-stream and ask viewers for donations.
All of the proceeds go to Children’s Miracle Network Hospitals and all of Luke’s donations have gone towards Children’s Hospital.
Luke told KDKA that he recently raised $700 on his own during a 24-hour marathon.
‘I love playing Lego games so much that I had to take a break,’ he said. ‘I went to sleep, and then started playing again for 24 hours,’
He says he plays video games to help take his mind off his constant pain and hopes that it will provide similar relief for other children.
‘[I want] to help other families and kids…it will distract [from] their pain,’ he told KDKA.