Community rallies for Kent boy living with severe idiopathic arterial pulmonary hypertension

Strapped to a backpack pump that feeds him medicine through a chest tube every six minutes, Cullen Steele stays on the go wherever his small body will take him. Despite facing considerable odds in his quest to live a long and healthy life, the fun-loving 10-year-old boy who enjoys history, cooking and playing video games maintains a smile and carries a sunny disposition.

Ultrawalker Don Stevenson

Strapped to a backpack pump that feeds him medicine through a chest tube every six minutes, Cullen Steele stays on the go wherever his small body will take him.

Despite facing considerable odds in his quest to live a long and healthy life, the fun-loving 10-year-old boy who enjoys history, cooking and playing video games maintains a smile and carries a sunny disposition.

“He finally went swimming for the first time in two years yesterday,” said his father, Brian. “He was ecstatic … we couldn’t get him out of the pool.”

Such simple pleasures in life often are difficult to perform for someone battling the effects of severe idiopathic arterial pulmonary hypertension – an incurable, life-threatening disease which, in many cases, requires a lung transplant to extend life.

For Cullen, his future is uncertain but the present brings hope and possibilities. He is anticipating a possible double-lung and heart transplant because of the disease. The medication, not to mention the 14 pills he takes each day, has greatly improved his quality of life and has temporarily delayed the need for transplants.

His family and doctors remain optimistic that a cure can be found. Until then, supporters are doing their best to support the Kent family who has deep ties to the Auburn community.

A local campaign, through the guidance of the Children’s Organ Transplant Association (COTA), has been established to raise awareness and funds for Cullen and friends similarly affected by this health plight.

COTA was founded in 1986 to help families pay transplant-related expenses. With the cost of a transplant often exceeding $500,000, many transplant patients are unable to shoulder the financial burden of such a procedure.

In Cullen’s crusade, volunteers have begun fundraising efforts to financially support the family with medical costs. The goal is to raise $75,000 to help cover medical costs for Cullen, a fifth-grader-to-be at Auburn’s Holy Family Catholic Church.

Many people in the community has stepped forward to help, including Don Stevenson, Auburn’s ultra-walker. The 74-year-old Stevenson, the Pacin’ Parson, is preparing to walk 1,200 miles around the state this summer to raise awareness and funds for Cullen and COTA.

“It’s a special walk because of Cullen. He’s a really good kid,” Stevenson said.

Walking Washington for the Breath of Life officially kicked off with a ceremony Tuesday at the City Hall Plaza.

Stevenson plans to cover the perimeter of the state, beginning this month and ending the walk at the Auburn Avenue Theater at 6:30 p.m. Aug. 20, just before the “Buddy Holly” benefit concert, proceeds of which will benefit Cullen.

Stevenson is a former teacher, pastor, volunteer, firefighter, truck driver and Marine. He has logged more than 40,000 miles for charities since 1998.

In the last 11 years, Stevenson has performed many benefit walks for various charitable organizations and people with physical challenges, birth defects and debilitating diseases.

When Stevenson heard about Cullen’s crisis, he gladly stepped forward.

“It’s the least I could do to help,” he said.

When Cullen was diagnosed two years ago, the news devastated the family.

“We were overwhelmed with the emotional factors … trying to learn about the condition and learn how to take care of him,” said Cullen’s mother, Colleen, a parish secretary for Holy Family. “We were trying to adjust. Our lives were turned upside down. And, also, we didn’t feel comfortable asking for that kind of help.”

But plenty of persistent friends, especially at the parish, convinced the family to find help and accept it. They soon established a fund through COTA’s assistance.

The medical costs are daunting. For instance, when Cullen struggled through a difficult February with medical visits, the family had to pay $2,000 in out-of-pocket expenses.

“It’s really been a challenge,” said Brian, who works in systems administration for an Eastside-based health care firm.

“The thing that is frustrating about the disease is it’s deceiving,” Colleen said.

“It’s good that Cullen looks so well … but we were not prepared for (the latest, declining heart test results).”

Since he has been diagnosed, Cullen and his family, which includes younger brother Aiden, are living each day to the fullest.

Cullen even made it to the White House two years ago. A Make-A-Wish Foundation granted Cullen’s dream in October of 2008 to meet President Bush while he was still in office. He chose the visit over a trip to Disneyland.

“It was cool,” Cullen said. “He (Bush) was very tall.”

As for all the support he’s receiving in his battle with the disease, Cullen is taking it all in stride.

“A lot of people want to help me,” he said. “And that makes me feel better.”

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HOW YOU CAN HELP

Volunteers are needed to assist with fundraising activities for Cullen Steele. Individuals and groups interested in more information can contact community coordinator Amy O’Donnell-Riley at 253-333-1755 or arjunyer@yahoo.com.

• To contribute online: www.cotaforcullens.com

• Mail: 2501 W. Cota Drive, Bloomington, Ind., 47403 (e-mail, cota@cota.org). Donations may be made in person at any Wells Fargo Bank branch location using account number 3523561722

• Information: www.cota.org, 1-800-366-2682

• Benefit: “Buddy Holly” concert will be held in Cullen’s behalf at 7:30 p.m. Aug. 20 at the Auburn Avenue Theatre, 10 Auburn Ave. For tickets, e-mail arjunyer@yahoo.com.

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