Creating awareness

SANDPOINT — A rare genetic disorder has Sandpoint Junior Academy students hitting the road at the end of the month.

School officials are working with an SJA student and his family to organize a walk-a-thon across the Long Bridge 10 a.m. on May 31. The goal of the event is to raise awareness and funds for hereditary hemorrhagic telangiectasia, or HHT.

“The more fundraising we as members (of the HHT Foundation) can do, the more it benefits the research,” said Nichol Timothy, mother of student Jake Timothy.

A genetic disorder that causes abnormalities of the blood vessels, HHT can result in some serious symptoms

for those afflicted by it. Early on, they can manifest as innocuously as a nosebleeds, but the disorder becomes much more serious when bleeding occurs in major organs like the brain, lungs, stomach and intestines.

Jake, a SJA student, knows what it’s like to deal with the disorder. His condition has required him to receive several operations, including a brain surgery. Most recently, he had two surgeries performed on his lungs to eliminate bleeding.

“As he grows, the telangiectasia grows as well,” Timothy said. “Other than that, he’s been good. He’s been healthy.”  

The Timothy family has learned to live normal lives despite the influence of the disorder. Jake loves his sports, and according to Ivan Dye, Sandpoint Junior Academy principal, he’s one of the best athletes in the school. The family’s main concern is making the disorder more widely known, Timothy said.

HHT only occurs in one of every 5,000 people, which makes it rare enough to be obscure but common enough to be dangerous if undiagnosed. Timothy has been working with local doctors to bring them up to speed on diagnosis. Dentists in particular are valuable allies, because one of the earliest ways to identify HHT is through the red marks that appear inside the mouth.

However, it’s also important that parents and the public know the signs of HHT as well, Timothy said. That’s why she’s working with Dye to organize the walk-a-thon. Sandpoint Junior Academy students have spent the past few weeks raising money for the HHT Foundation — the primary organization for disorder research. They plan to meet 10 a.m. Friday, May 31 near the Long Bridge bike path. From there, they will walk across the Long Bridge in a show of support for those with HHT. Those who wish to accompany the crew, including elementary school classes or any other individuals, are welcome to do so.

Those with questions can contact Timothy at 908-334-8199 or at timothymnmj@aol.com.

In addition, residents can contribute with donations online at www.firstgiving.com/fundraiser/HHTDonations/sandpointwalk