Fundraiser set to help family buy medical van

The fact that Jacob Butierries celebrated his seventh birthday in March is a miracle.

The Makakilo boy was diagnosed with spinal muscular atrophy type 1 as an infant. It’s a hereditary disease that affects a child’s muscular development, making it difficult to hold one’s head up, roll over, crawl, sit up or walk, and most babies who have it die within two years.

Still, Jacob has outlived his prognosis by five years, according to his mom, Lori Butierries.

The family celebrated his birthday at home with a cake, balloons and presents. The occasion was particularly precious this year because it was one of the few times in his life he was able to celebrate at home instead of in the hospital.

"He loved it," said Lori Butierries. "We cherish each and every day that we get to have. Him surviving this long is an exception to the rule, and Jacob is the happiest kid you’ll ever meet. If he can be happy despite all his hardships, how can we not be thankful?"

But the family needs help, particularly with the cost of purchasing a new, wheelchair-accessible van to transport him safely, which will cost about $60,000. More than half of that has been raised through a gofundme.com campaign the family set up in March.

The Honolulu Branch 46 Fleet Reserve Association is stepping in to help fill the gap with its Armed Forces Day Festival and Fundraiser on May 16.

The Fleet Reserve Association, a 501(c)(19) War Veterans organization, has a mission of helping sea service personnel. Jacob’s dad, Dennis Butierries, is an active-duty Coast Guardsman who formerly served in the Marine Corps. Mom Lori Butierries, born in Honolulu, served in the Navy.

Association President Julian "JJ" Wynn said when he learned of Jacob’s story, it touched his heart and he wanted to help. Wynn’s wife, Lauren, unit vice president of the Ladies Auxiliary, brainstormed with other members and they decided Armed Forces Day was the perfect time to hold a festival and fundraiser for Jacob.

The organization has dubbed the mission "Jacob’s Quest."

When Jacob was first diagnosed after a routine checkup at age 9 months, the doctor said Jacob would be lucky to make it to his second birthday. The Butierrieses lived in a daze that turned into depression. On top of it all, Jacob’s older sister, Abigail, 9, has an autism spectrum disorder.

It wasn’t until after Jacob’s second birthday that the Butierrieses began to feel some sense of hope.

The van the couple needs is not covered by insurance, but Lori Butierries said it will be a safer option to transport Jacob to his medical appointments. Currently, she has to pull over anytime sharp turns or abrupt braking cause Jacob’s head to fall forward, blocking his airway. In the new van, equipped with a lift, he will be able to stay in his power wheelchair, which holds his head securely.

She is also excited that Jacob will get to experience a little independence in his self-driven power wheelchair.

Lori Butierries admitted she and her husband were a little embarrassed, at first, setting up the crowdsourced fundraising website to ask for donations from family, friends and strangers, but realized they could not achieve their goal otherwise. They are grateful for all contributions, both great and small.

"Your generosity will never be forgotten," she said.

To donate, visit gofundme.com/njehh4.