REXBURG — A 4-year old boy experiencing mitochondrial disease will be the recipient of proceeds from this year’s “Run for a Reason 5K.”

AvantGuard Monitoring is sponsoring the event and chose Jack Patteson, 4, son of Josh and Maddie Patteson, to receive some much-needed funds to help him with various bills arising from his illness.

The 5K will be held at 9 a.m. Sept. 16 at Porter Park. It costs $26 to participate, and anyone from runners to parents pushing strollers to bike riders are invited to attend. Prizes will be awarded. There will also be a kids race for those 12 and under that costs $5 to participate in. The Pattesons plan to attend the 5K and are beyond grateful for the money to be raised.

Maddie Patteson used to work at the AdvantGuard Rexburg office. When Jack began displaying symptoms of mitochondrial disease and started suffering a series of strokes, she resigned to help care for him full-time.

Maddie Patteson says that mitochondrial disease affects her son both physically and mentally.

“He’s pretty much at a newborn — at a one or two months level,” she said. “He’s not super talkative. He’s nonverbal. He does still hum and coo a little bit.”

According to the Mayo Clinic, mitochondrial generates most of the body’s energy. When the Mitochondrial fails to function, it creates less energy and results in “cell injury.” The brain, heart, liver, muscles, kidneys and the endocrine system are especially impacted by mitochondrial disease.

Common symptoms include muscle weakness, imbalance, gastrointestinal problems, poor growth, liver disease, heart disease, diabetes, visual and hearing issues, lactic acidosis, and developmental delays, said the clinic.

Maddie Patteson and her husband, Josh, recently moved to Midvale to be closer to family and to Jack’s doctors.

Every year for the past decade, AdvantGuard has raised money for a child suffering from a challenging disease.

“It’s to give relief to the parents,” said the company’s Operations Manager Jessy Ellis. “It’s something the president of our company pushes. He believes in giving back when we can. We care about being involved with the needs of our community.”

Last year, the company held a 5K for Klaire Jardine who experiences a congenital abnormality. During that event $22,000 was raised — the most AdvantGuard has raised in its 10-year, 5K history. The expectation is to raise as much if not more.

“Last year it was fantastic for us,” Ellis said.

Jack Patteson was six months old when his parents noticed he was experiencing developmental delays. When Jack was about 15 months old, doctors gave the Pattesons the boy’s devastating diagnosis.

That came as a shock because Jack didn’t appear sick at all, Maddie Patteson said.

“He was pretty healthy for a one-year-old. He was happy,” she recalled.

Jack currently also experiences epilepsy and dysphagia or difficulty swallowing.

“He’s on a feeding tube,” Maddie Patteson said. “He also has sleep apnea and low muscle tone. He’s got a whole long list of things.”

Jack’s medical bills are paid by Medicaid thanks to Idaho’s Katie Becket for Kids program that covers the cost of medical treatment for children with chronic health issues.

“It’s a very awesome program that we’re very thankful for,” Maddie Patteson said.

The Pattesons support each other and talk continually.

“I think going through this — having a child a lot of health issues — can either make or break a family,” she said. “Our marriage has become so much stronger. We’ve been able to grow closer. It makes it a little bit easier going through this with your best friend.”

The couple also leans on their respective family members and their faith in God.

“It’s interesting finding ourselves in this situation,” Maddie Patteson said. “It’s something that isn’t due to any choices we made. It’s definitely brought its challenges.”

It’s also brought with it immense blessings, she said.

“We’ve had different encounters with different people and the doctors we have,” she said. “My background being a CNA before Jack has helped a lot. And just being around Jack — he’s got an angelic spirit.”

The family checks in with Jack’s pediatrician every three months. He’s also seen by a geneticist, a neurologist and a palliative care team. Jack also undergoes physical and occupational therapy, and later this year the family will see a mitochondrial disease specialist in Seattle.

The family recently took an RV trip to Zion and Bryce national parks.

“It was a lot of fun,” Maddie Patteson said. “Jack loved being around a campfire. We got to hear him laugh, and those times are just magical.”

Yet, there are moments when Jack’s illness causes a lot of heartache for the family. Maddie Patteson finds comfort through a therapist friend who also has a son with disabilities.

“Something she always said, ‘There’s always grief and joy simultaneously,’” she said. “It’s about finding those moments of joy within the grief.”

It can be challenging when the doctors don’t know what to do, Maddie Patteson said.

“It’s weird to be in a place where the doctors are stumped,” she said. “It’s to a point that the doctors are asking me for advice. It’s interesting to have a kid so rare that the doctors ask for your medical advice.”

Despite all the ups and downs, caring for Jack has been a positive experience, Maddie Patteson said.

“I get to be with an angel every day,” she said. “You can’t be bitter about that.”

For more information on the upcoming Run for a Reason 5K, visit givebutter.com/jvSjGg.