Owyn and his family need help.

     Owyn is a 13-year-old fun-loving amazing kid who loves football, baseball, archery, karate, swimming, video games and animals. He was born with congenital heart disease and, at six days old, went into heart failure. He was diagnosed with hypoplastic right heart syndrome, double outlet right ventricle, interrupted aortic arch, and ventricular septal defect. Over the next two years, he underwent four open-heart surgeries. Despite all the odds against him, he survived and thrived. He did better than anyone could have expected, and although he is functioning with single ventricle anatomy, he earned a black belt in karate, plays baseball, went to nationals in archery and is an honor roll student.

     Then on May 16th, everything changed for him. He began uncontrollable coughing until he coughed up something that looked like a part of the lungs. His mom took him to the ER at Mott Children’s Hospital, where he had all his heart surgeries. Within an hour of his arrival, he went into respiratory failure along with testing positive for COVID-19. His oxygen saturation dropped to 50% despite being on bypap with 100% oxygen support. He was admitted to the PCTU (pediatric cardiothoracic intensive care unit). He was diagnosed with a rare pulmonary disease known as Plastic Bronchitis (PB), which can be caused by his single ventricle circulation. This respiratory condition consists of blockages in the brachial airways called “casts”. These casts are formed by lymphatic fluid leaking into the lungs, which then hardens into rubber-like ‘casts’ of the bronchial tree. Which, if they aren’t coughed out, can cause respiratory failure and asphyxiation. It is a life-threatening disease if left untreated. Due to its rarity of less than 600 known cases ever, it is still being researched for treatment options.

     Since his diagnosis, Owyn has undergone extensive testing, including echocardiogram EKG, x-rays, ultrasounds, lung function testing, bloodwork, and heart catheterization. He remains on oxygen-breathing treatments every 4 hours. The University of Michigan has contacted the Children’s Hospital of Philadelphia (CHOP) with his case. CHOP is the only center in the world that currently has testing specifically for PB. They do a contrast MRI procedure that will locate the lymphatic leak to then repair it in a catheter surgery. Owyn is currently on the waiting list to be flown to CHOP to undergo this procedure. He has been in-patient at U of M Mott Children’s Hospital since May. Until he can go to CHOP he is required to remain hospitalized. This has been very stressful on his family as well. His mom has been staying at the hospital with him as well so has been unable to work now for six weeks due to his condition.

     We are asking for help for Owyn and his family. His mother is a single working mom working full time at General Motors in Lansing Michigan. She has been on emergency leave and has not received a paycheck in the last 6 weeks. She has an older 16-year-old son as well that she takes care of. The inability to leave his side, traveling to and from her home to the hospital, while being faced with the expense of transporting Owyn to CHOP, while still trying to maintain a household has put an additional burden on their family. On top of all that is happening with them, Owyn’s mother was in a car accident while on the way to see him at the hospital. Luckily nobody was injured, however the damage to her vehicle and insurance costs added even more stress on the family. Any help is greatly appreciated and will really help them out. We pray for Owyn to get his strength back and overcome his illness so he can get back to doing what he does best, being an incredible 13-year-old that enjoys his youth and life.