Deon

Age: 10 years
Hometown: Kotlik, Alaska
Diagnosis: Infantile Hypophosphatasia

Judging by his wide grin and sparkling eyes, Deon Teeluk’s proclivity to race around like an all-star athlete would come as no surprise if not for his reliance on a walker. All throughout his infancy, Deon suffered from a host of inexplicable ailments, including pneumonia, lack of weight gain and broken bones. Finally, at the age of nine months, a series of blood tests determined the cause of Deon’s troubles: Infantile Hypophosphatasia, a rare metabolic bone disease.

Once told he wouldn’t make it to his first birthday, and later that he’d never make it past age nine, Deon’s treatment plans eventually led him, his mother and his aunt to a stay at the Ronald McDonald House, far away from their small native village on the Alaska Bering Sea. “I am very thankful my sister is allowed to accompany me and stay here,” says Janie Teeluk, Deon’s mother. One look around at the walker, heavy duty stroller, and other paraphernalia related to Deon’s care, and one realizes transporting all this can’t be easy.

“I like that the House is quiet and safe,” Janie says. “Being in a strange place is hard, but we are thankful for everything here,” she continues, mentioning the availability of special foods fitting within Deon’s mostly liquid diet. Deon appreciates the chance to swim in the Seattle Children’s Hospital therapy pool and tries to be at the House for any activities, in which he participates with a bright smile whenever possible. “Sometimes it is hard for him to play with other kids because his bones can break so easily,” Janie shares, “but the volunteers at the House make things fun, which he really likes.” Low-impact activities meet with approval, including tearing around on a big-wheel bike or getting his face painted like a tiger.

While Deon’s father stays in Kotlik, a village of approximately 500 people, to care for the family’s seven other children, Janie takes the day-to-day care and uncertainty of Deon’s health in stride as best she can. “It’s good to have a roof over our heads throughout this experience and to have my sister here with me for support, too.”