Terri, Michael, Owen, Ella and Alana

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Milford, ME

The strength of family has always been evident for Terri and Michael, parents of three from Milford, Maine. However, since 2014, when their second baby, Ella was first diagnosed with Systemic Juvenile Idiopathic Arthritis, they've noticed a family bond like never before.

Ella, an active five-year-old who loves just about anything princess, lives daily with a rare form of arthritis that causes her immune system to malfunction and attack her body’s healthy tissues and organs. In Ella’s case, her heart has been affected by the disease and today she lives with a condition called pulmonary hypertension. Her new normal includes wearing a backpack of medication pumped directly to her heart, changing tubes in her chest every other day and continuously monitoring her heart rate. Any slip up in treatment could be catastrophic for Ella.

“She is the most mature five-year-old I have ever met,” said Michael. “When Ella was first diagnosed with pulmonary hypertension, she turned to us in the hospital and asked ‘What do I have to do to make my heart better?’”

Ella is supported by a team of medical professionals as nearby as her pediatrician at the Northern Light Eastern Maine Medical Center in Bangor, Maine and as far away as her cardiologist in Boston. Being on the road for medical care, or extended hospital stays, is part of everyday life for this family.

“When our family was split in two different locations, the kids were so tough,” said Michael. “Terri and I were sneaking away to cry and the kids were growing stronger. They have become a unit and Ella is the glue that holds us all together.”

Michael and Terri made adjustments to their careers in order to properly care for Ella. At first, that meant offsetting their shift schedules. Eventually, Terri left her job entirely to become a full-time caregiver for Ella. This had a financial impact on the family and they made the decision to move into Terri’s parents’ home to save money.

The pediatrics team at Northern Lights Eastern Maine Medical Center checks in weekly on Ella’s health and the family’s wellbeing. When Terri learned about Irving Oil’s Fuel the Care program from Nurse Cindy, she knew it meant one less worry for their family.

"When you are going through all of this and there is so much on your mind, more than anything, to not have to worry about where to get gas or how to pay for it – that’s huge,” she said.

While the road for Ella may not always be easy, with the support of her playful siblings, loving parents and determination to thrive, they know nothing can stand in her way.