Clayton Cowan hasn’t had it easy. At three-years-old, he was diagnosed with chronic granulomatous disease (CGD), a disease that inhibits his immune system from fighting off harmful pathogens. He was born with CGD, but it wasn’t until he suffered a severe bacterial lung infection that he was diagnosed. In 2005, he was hospitalized at Johns Hopkins Hospital, where “doctors pulled off a miracle,” says his mother Marty, and he recovered. Since then, he has been on a constant stream of medicine that helps his immune system stay strong. While this has been a temporary fix, the amazing power of his family is now stepping up to offer a permanent solution.
Clayton’s 10-year-old brother, Graham, has been all too familiar with the hospital environment. He’s two years younger and has experienced firsthand the suffering Clayton has been through. “Graham does not like needles or doctors at all,” Marty notes. When the doctors told her that a permanent solution to Clayton’s health issues would be a bone marrow transplant, and Graham was a perfect match, she didn’t know how to approach him. “We sat him down and told him how much he would be helping his brother, and that it would be a lasting solution to the problems he’s always had.” While this was helpful, she says, “In the end, all he asked for was some mint chocolate chip ice cream and an Under Armour t-shirt.”
Graham completed the bone marrow donation in June and has been enjoying his summer ever since. “He’s been staying with family, boating, fishing, rafting, taking golf lessons, and even going to a football camp! Everyone is doting on him,” Marty notes, “He is truly a hero.” The rest of the Cowans are staying at the Believe In Tomorrow House at St. Casimir while Clayton undergoes the bone-marrow transplant procedure and treatment at Johns Hopkins Hospital. “When Clayton first started treatment, we were commuting from our home in Fulton, MD, to the hospital, and I was ‘sleeping’ there for 56 straight days. It is amazing to be so close now! The amenities and the garden at the house, combined with the great neighborhood in downtown Baltimore, really make this place special,” she comments.
Children with a critical illness are asked to undergo treatment regimens that overtake their lives, but the illness puts a strain on other family members as well. Clayton’s mother found relief in yoga, but it wasn’t just for her. “My husband and I are the foundation for our children, so we need to take care of ourselves in order to properly care for them,” she says. “No matter how tired or weary I am, I know hitting the yoga mat helps me stay healthy physically and mentally.”
Marty also knows that other parents of critically ill children may not have an outlet. That’s why she has recently started instructing weekly yoga classes at Believe In Tomorrow’s first hospital housing facility in Baltimore, MD, the Children’s House at Johns Hopkins. She coordinated a donation of yoga mats from lululemon athletica and holds classes in the lower level of the building after the Family Suppers have finished.
“I recently became certified to instruct, and I thought this would be a great way to give back,” she comments. “I know what parents are going through; there’s a feeling of hopelessness. I’ve had emotional breakdowns because of Clayton’s illness, and I realize how important an outlet like yoga can be.” The classes aren’t just for parents, though, as Clayton was a participant in the first two classes Marty taught at the Children’s House at Johns Hopkins.
The Cowans are staying with us during Clayton’s treatment for the next few weeks, but we’re looking forward to seeing them again later this year. They have signed up for a week-long stay at our log cabin respite home in Asheville, NC, the Believe In Tomorrow House in Pinnacle Falls. They’ll be visiting just in time, days before Clayton’s 13th birthday in October. “We hope he’ll be doing much better then, and we’re looking forward to all the fun activities, hiking, and just taking in the outdoors.”