Owen Delisle was just 3 days old, seemingly healthy, and settling into a happy home in Fort Kent with his mother and father and two older brothers.
Then came the midafternoon phone call from Eastern Maine Medical Center.
“They said we needed to bring him to the hospital right away, because he might die,” said Owen’s mother, Tammy, recalling the devastating conversation in March 2006. “We drove to Bangor that night.”
That tense 3½-hour drive in the dark was just the first of many trips to Bangor for the Delisle family. Owen, now a busy, inquisitive 2-year-old, was born with a rare metabolic condition known as a urea cycle disorder. He lacks the ability to produce a specific enzyme that removes ammonia, a natural byproduct of protein metabolism, from his blood. Only a closely monitored lifetime regimen of diet and medications can keep the toxic element from building up and causing severe, irreversible brain damage, mental retardation, coma and death.
The condition is one of 31 genetic disorders that every new baby in Maine is tested for with a tiny blood sample, usually collected just minutes after birth. Not all states screen for it. It is estimated to occur in one of every 10,000 births. There is no cure.
On Wednesday, the whole Delisle family was at EMMC — Tammy and her husband, Travis, 7-year-old Caleb, 4-year-old Austin and Owen — to thank the Children’s Miracle Network and the Irving Oil company for the financial assistance they’ve received over the past two years. The occasion also marked Irving Oil’s 2009 corporate gift to the Children’s Miracle Network, in the amount of $50,000.
Since 2003, Irving Oil has pumped more than $265,000 into its Fuel the Care program, helping Maine families like the Delisles go the extra mile to get the care their children need. The funds are distributed by hospital social workers in the form of gift cards that can be redeemed at any Irving station or Mainway, Big Stop or BlueCanoe market for gasoline or food.
To date, almost 8,800 families from 210 Maine communities have been served, as well as families from several other states whose children have been cared for at one of the seven hospitals affiliated with Eastern Maine Healthcare Systems.
Lars Trodson, public relations manager for Irving Oil in the United States, said the charitable program is a natural fit for the company.
“We’re in the fuel business,” he said. “In big, rural states like Maine, people routinely travel huge distances under very stressful conditions to get care for their children. We think this is the best way we can help our communities and our families.”
The dollar amounts typically are not large, but they provide welcome relief nonetheless.
“We might get $60 or $100 for a trip,” said Travis Delisle. “Or less, if they’re running low on money.” It’s enough to take the edge off, he said, during a time when the family’s resources are spread thin.
Tammy works full time as a social worker. Travis Delisle works four jobs — he teaches physical education in the local elementary school, coaches girls high school basketball, delivers mail and takes on carpentry work.
“Of course I’d rather be home with my children,” he said. “But it’s a sacrifice I welcome. I know why I’m doing it.”
Still, money is tight.
“There’s a lot of anxiety; you worry about where every penny is coming from,” Travis Delisle said.
Though the family goes about the business of leading their lives in Fort Kent, Owen’s condition requires them to make the drive to EMMC at least once a month. In addition, they twice have taken him to Baylor University in Texas to participate in a research project, and they have attended three national conventions to learn all they can about managing his condition and meet other families coping with their children’s urea cycle disorders.
The traveling is essential, Travis Delisle said, but the cost mounts up quickly. The roughly 380-mile round-trip journey to Bangor easily can cost in excess of $100 just for gas and meals, especially if they travel with all three boys, and significantly more if they have to spend the night. In combination with the day-to-day costs of Owen’s specialized diet — a loaf of low-protein bread costs $17, a box of macaroni and “cheese” costs about $8 — and the routine expenses of raising a family of lively boys, any extra help is deeply appreciated.
“Our community has been wonderful,” Travis Delisle emphasized. “I cannot thank them enough.” In addition to hosting local fundraisers, he said, people have taken a strong interest in Owen and the whole family. Personnel at the local hospital and at the elementary school have been educated about Owen’s rare disorder.
Travis Delisle says that level of community support offsets some of the stress of raising a child with such profound needs.
“There’s a misconception that if people look normal and healthy, they are,” he said, watching his three active boys horsing around in the play area of the EMMC pediatric unit. “Owen looks fine and healthy now, but we know he could very easily not be with us … Not a day goes by that we don’t worry about how he’s doing and what the future will bring.”
Trodson, the Irving Oil spokesman, said it is a privilege to help families such as the Delisles.
“We do the easy part,” he said Thursday. “It is the families themselves and the dedication of the staff at Eastern Maine Healthcare that makes this work.”
To contribute to the Fuel the Care fund, or to inquire about additional health-related travel assistance that may be available from Irving Oil, contact Trodson at the company’s U.S. headquarters in Portsmouth, NH. The number is 603-559-8742.
For more about the Children’s Miracle Network, go to www.childrensmiraclenetwork.org.
For more information about urea cycle disorders, go to www.nucdf.org.