Eleven-year-old Marshall Fee has already formed some strong opinions: waffles over pancakes at breakfast time and, at the park with his friends, the slide over swings. Early morning starts at summer camp? A definite no.
When people see the Southmoreland middle schooler’s endless curiosity and lively spirit, they would not guess that he has had three heart surgeries and is listed to receive a donor heart.
His parents have partnered with the Children’s Organ Transplant Association (COTA) for September and October fundraisers that assist the family with the ongoing costs of care.
Marshall was born in October 2011 with hypoplastic left heart syndrome — in which there are two rather than four chambers in the heart. His mother, Molly Fee, and his aunt, Carey Beam, were in the delivery room when Marshall was rushed out of his mother’s arms and transferred to the cardiology unit in UPMC Children’s Hospital of Pittsburgh. He underwent heart reconstruction surgery just 24 hours after birth.
He underwent a second procedure to redirect blood flow from his heart to his lungs and ease the stress on his heart three months after the first surgery. He then went through a similar procedure when he was 3½ years old.
“Because he only has half of a heart, they had to take half the work off of his heart,” Fee said. “The first surgery focused on the top part of his body, and the second one focused on the bottom half. It’s called a Fontan heart.”
When Marshall was 8, he contracted plastic bronchitis, a rare and life-threatening condition that compromised the function of his Fontan heart. Treatment at Children’s Hospital of Philadelphia saved his life but revealed his mended heart would not carry him through to adulthood.
Marshall now is listed to receive a donor heart. He is able to live at home — and go to school — while he waits for a transplant.
“I think once the reality hit us that the transplant is going to happen, it really did take us some time to come to terms with the fact that we’re proceeding down this road,” his mother said. “It just kind of struck us that this isn’t going away — even when Marshall is an adult.”
Fundraising for Marshall
Beam explained that COTA works with community volunteers and ensures that all of the funds raised by a COTA community campaign in honor of a child or young adult will be used for transplant-related expenses. Once a family chooses to work with COTA, that family is eligible to submit allocation requests to COTA throughout the patient’s lifetime.
Funds given to transplant families by the nonprofit are used solely for transplant-related expenses, such as annual copayments, deductibles, premiums, travel, hotels and costs of care that insurance doesn’t cover. Once a family requests an amount from COTA, the money is sent to them in full.
“The COTA organization is simply benevolent,” Beam said. “They are focused on helping children and their families.”
Families are not required to raise any amount of money to receive assistance, but doing so helps them and others partnered with the organization. Lauren Wilmer, campaign and outreach manager at COTA, has been working with the Fee family since they signed on with the organization.
“We help (families and volunteers) plan events in the community based on the patient’s interests,” Wilmer said. “Some communities are smaller than others, so we work with them in every way possible to help them plan fundraising events to raise money.”
The Fees will be coordinating fundraisers in September and October in which COTA will receive a percentage of participants’ restaurant bills at a local Chipotle and Primanti Bros.
Wilmer said COTA provides funds to cover transplant-related expenses to families and the patient before, during and after the transplant.
Since his bout with plastic bronchitis, Marshall has been living his life as an everyday child, or as normally as his heart allows.
Fee said the family has attempted to give Marshall the space and opportunity to explore his interests within reason. She said that trying new things is all about preparation.
“You don’t want somebody’s health condition to define who they are,” she said. “But, when it is such an important part of your life, it really becomes a factor in everything.”
Fee said that if the family wants to do an activity that is physically exerting or in the heat, everyone knows to schedule extra time so Marshall can participate.
“It affects every aspect of our lives every day,” she said. “My life, my husband’s life and Marshall’s big brother’s life. It plays a huge role in how we live.”
Fee works as a substitute in the cafeteria at Southmoreland so she can remain close to Marshall in case of an emergency.
Marshall will be heading to a new school this year, starting his first year as a middle-schooler.
While his condition is not outwardly noticeable, he does fatigue quickly and often has to take half-days from school. His mother said she appreciates all of the work that Southmoreland has done to help Marshall keep up with his school work.
Marshall knows he is on the transplant list and is prepared for returning to the hospital once more. He is more excited, however, to be able to get back to school, see his friends every day and eat lunch with them in the cafeteria.
“Marshall does have this big story for such a young man, but he is so brave and so happy,” Fee said. “He just wants to be like a regular kid.”
Haley Daugherty is a Tribune-Review staff writer. You can contact Haley at 724-850-1203 or firstname.lastname@example.org.