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Tristan Kyle has Pompe Disease, will travel to North Carolina to meet with specialists

CONTRIBUTED PHOTO: STEPHANIE KYLE - Tristan Kyle, 5, has Pompe Disease, in which the body cannot break down glycogen. His family is fundraising to him to attend Duke Childrens Hospital to meet with doctors who specialize in the condition.

A young Estacada resident's family is ensuring he receives the best treatments available for his rare medical disorder.

Tristan Kyle, 5, was born with Pompe Disease, a rare condition in which the body lacks the enzyme to break down glycogen. Because of this, the glycogen remains in the muscle cells and weakens them, making it difficult to move.

"When he was (smaller) he could sit up a little bit and move his arms and legs, but over time the muscles have gotten larger, and there's more space (for glycogen to build up), so he can't walk," explained Tristan's older sister Stephanie Kyle, who is also his nurse. "His right arm has some movement, and his left arm is really weak."

There is no cure for Pompe Disease, and Tristan receives enzyme replacement therapy for the enzyme his body lacks, which works well on the cardiac muscles but not as well on the skeletal muscles. Each day Tristan also receives multiple respiratory treatments, along with motion treatments to move his extremities.

Less than 10,000 people around the world have Pompe Disease, and many children born with it are not expected to live past their first birthday because of heart failure or lung complications. Stephanie explained that Tristan was first brought to their parents through foster care and was on hospice.

"My parents had a family meeting and said, 'This is a foster child that may not live, but he needs a place. Is that OK with all of the family?' They, at that point, had five adopted children that were pretty small but could still kind of understand that he may not live," Stephanie recalled. "Then (Tristan) went up for adoption, and everybody had fallen in love with him."

Several years later, Tristan's family is fundraising to bring him to Duke Children's Hospital in Durham, N.C., to meet with doctors who specialize in Pompe Disease. Because Tristan's doctors in Oregon only treat two other patients with the disease, they often consult with the team at Duke. Several doctors at Duke have followed Tristan's case since he was born, but have not yet met him. In addition to meeting with doctors, Tristan and his parents will also be able to connect with other children who have the disease and their families.

Stephanie created a GoFundMe page to cover the costs of airfare, a hotel room and a rental car for the trip to North Carolina. The GoFundMe is available at www.gofundme.com/help-us-take-tristan-to-duke.

"It will be a huge trip for (Tristan)," she said. "(The doctors) specialize in Pompe, so it's really important that he sees them. There's new research on the enzyme replacement therapy he gets."

Stephanie added that her brother is one of the strongest people she knows.

"He's a smart little kid, and he's been through so much," she said. "He's had six surgeries and numerous pokes. He's had a bunch of different hospital stays."

Tristan attends preschool once a week and enjoys spending time with children his age.

"He really just likes to watch other kids," Stephanie said. "He likes to be outside watching them play, things he can't really do but he can be included in."

Though Pompe Disease makes it difficult for Tristan to speak, he is starting to work with Eye Gaze technology that will allow him to communicate more with others.

"We're really excited," Stephanie said. "We can't wait to hear what he has to say."

She noted that Tristan often communicates by rolling his eyes or putting his arm over his face to say no.

"He really is a fighter, and he really wants to just do the best that he can in life," Stephanie said. "He's just a normal little 5 year old. He's just kind of trapped in his own head."

Help Tristan get to Duke

This summer, 5-year-old Tristan Kyle will visit Duke Children's Hospital in Durham, N.C., to be seen by a team of doctors specializing in Pompe Disease. Visit www.gofundme.com/help-us-take-tristan-to-duke to donate to the cost of airfare, a hotel stay and a rental car for the trip.

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