GREECE, N.Y. (WROC) — After going nearly 10 minutes without oxygen, directly after being born, doctors said Jett Pinson would never be able to walk, eat, or even smile.
The condition is called Hypoxic Ischemic Encephalopathy, which in short means that not enough oxygen was getting to his brain. When he was in the NICU, he was on life support for a whole week, faced kidney failure, and even had uncotrollable serizures.
While he fought through incredible odds — his epilepsy is under control with medication — still has a myriad of health issues. He needs a gait trainer to help him walk, and is immunocompromised. When News 8 met with Jett and his mother Megan Culkin, he was recovering from RSV, and pneumonia.
Challenges his parents say could be overcome with stem cell therapy. They are even traveling to Texas later this year for intensive therapy, and have eye surgery scheduled in August to help his eyes work together better.
Perhaps needless to say given the doctor’s visits, and equipment he needs — from his gait trainer, to a special stroller — it is expensive keeping Jett healthy.
“We wouldn’t have it any other way,” Culkin said, beaming down at her son. “Jett is so much fun, oh my gosh.
“He loves doing everything and anything, he’s very adventurous, he’s wild,” she said. “We always say, if he could walk he would be running through the house, throwing things, laughing… He loves to make people laugh, If you ask for a hug and a kiss, he’ll give you a hug and a kiss.”
They are raising money for Jett’s therapy treatments next weekend by holding a fundraiser where they will be having a cook out with poker card pull and an auction. They also sell t shirts and have a GoFundMe page.
“We are hoping to get him stem cell surgery as well as some other surgeries to help with hopefully walking. Jett can walk if he’s assisted, the surgery will help loosen up his tone to help him walk on his own,” Culkin said. “He is our everything and just for people to acknowledge him and support him even if it they aren’t supporting us financially, just cheering him on… It means absolutely everything to us.”
The event on the weekend of is being held at the Moose Lodge in Henrietta next Saturday from 12:30pm-4:30pm, with a laundry list of businesses helping out to support Jett.
Cash Raffle Tickets through August 1st for sale at:
- BTB Wood Fired Pizza Bar & Grill
- Robbies Bar & Grill
- Dutch Mill
Some of the 40 businesses helping with the fundraiser:
- LRC Woodworking
- Wise Guys & Mad Hatters Hideaway Smoke Shops
- JUD Just Us Detailers (Car detailing)
- RAMA: Rochester Academy of Music & Arts
- Jordy’s Spirits
- Pet World
- Olympia Family Restaurant
- SOHO Bagels
- Tanning Oasis
- Stoneridge Wine & Liquor
- Andy’s Candies
- Bella Pasta
- Grilled Cheese Factory
- Ciaccia Deli
- Pinots Palette
- Painting with a Twist
- Blue Ridge Grill
- Red Lobster
- Outback Steakhouse
Jett even has custom cornhole boards donated by LRC Woodworking: