Puyallup infant facing tough fight against rare disease

Puyallup infant facing tough fight against rare disease
PUYALLUP, Wash. -- Every parent knows what makes their children unique.

It can be in how they look or perhaps a special skill. For a Puyallup family, uniqueness comes in a dangerous genetic condition.

Seven-month old Casen Buswell is one of only 14 known people in the world with something called Glomuvenous Malformations Plaque Type.

He has visible lesions, spreading from his collarbone, over his shoulders, down his arms and torso. Plaque is hardening in his vessels, muscles and skin and could lead to heart failure.

The only doctors with experience treating GVM plaque type are in Belgium. The family travelled there over the summer and learned Casen will need monthly laser treatments, for as long as three years. The laser should stop the hardening of Casen's vessels, but the timing has to be right so he won't have to repeat the painful process right away.

They also want his brain to develop further, making him stronger to endure the anesthesia.

"There's two doctors in the US that have the technology to do it," said Casen's mother, Jenna Buswell. "But, it's a risk they would have to take in order to treat. There's so few, he would be number three that's ever been treated."

The domestic doctors recently told the family they can't take the risk.

That leaves only one option: Constant travel to Belgium or moving there for the course of treatment.

"Not a minute goes by that I don't think, how are we going to do this?" Jenna said. "How are we going to make it happen? But in my heart I know we have no choice. We have to do it."

Jenna guesses it will cost hundreds of thousands of dollars, even with insurance.

The family closely monitors Casen's progress - as they try to prepare for a long, expensive - but life saving journey.

If you would like to help, you can make a donation in Casen's name at any Harborstone Credit Union. You can also donate online here.