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news News Tuesday, August 11, 2020 Tuesday, August 11, 2020 11:02 AM - Tuesday, August 11, 2020 11:02 AM

Ella's story

Ella's story

16-year-old Ella loves theatre, especially musicals. A rising junior, she enjoys science and math. Ella has taken many walks and hikes this summer. “With my mask on – don’t worry – and it has been so much fun!” she said.

Ella was roasting marshmallows in her backyard with her family when she was 5. Her dress caught fire, causing the grill to explode and burn Ella. She spent about four weeks at the Boston Shriners Hospital, returning every six months for follow-up surgeries, and now receives treatment once a year. “Every time I’m at Shriners [Hospital] I am struck by the positivity and kindness of the staff. I have been going to Shriners for 11 years, and they have had such a positive impact on my life." Ella said. "I cannot imagine receiving care anywhere else.”

Grateful for the care she received, Ella wanted to do something meaningful for other patients, and she found a creative way to support them. “I organized a sticker-making workshop at my school. This was to raise awareness for the work Shriners [Hospital] is doing, and to donate materials and pre-made stickers to use as a fun activity and decoration!” Ella said. “It is an unconventional fundraiser, but I wanted to donate something I would have wanted as a kid there. One thing I particularly appreciated was when nurses would let me customize my mask before surgery. It made everything seem less daunting and allowed for some fun before a very scary process for a 7-year-old.”

“Anyone who has ever come into direct contact with the Boston Shriners Hospital wants to give back,” Ella’s mother, Gretchen, explained. “It is not just our honor but also our duty to give back to this institution that saved our daughter’s life and made sure her care was what she required – not what an insurance company thought was appropriate. We will never forget how Lori, Ella’s first physical therapist, told us if Ella needed two hours to reach a goal, they would work at Ella’s pace and take the time she needed. Those who experience this kind of care never forget it.”

Ella’s parents, Gretchen and Anthony, learned about a Fenway NASCAR driver who was a former Boston Shriners Hospital patient. They contacted the Red Sox and Fenway Sports Group about organizing something together for the hospital. “They immediately wanted to be involved, and assigned staff to help us with Shriners Day at Fenway Park, with Ella and Dr. Sheridan throwing out the first pitch. It was an incredible day and yielded a great donation for the hospital."

The family met Robert L. Sheridan, M.D., soon after Ella’s injury. Ella’s grandmother is a nurse at Johns Hopkins, and she asked colleagues where to get the best burn care. A family friend contacted Walter Reed Hospital with the same question. “Both my mother’s colleagues and the contact at Walter Reed came back with the same answer. They said that the Boston Shriners Hospital was the best place for Ella, and Dr. Robert Sheridan was the best of the best. We took great comfort knowing Ella was in the best place with the best people,” said Anthony.

Ella has a message for other children with burn injuries. “Life goes on, and the pain and hardships that come with such a life-altering injury turn into battle armor that you wear every day. I could not imagine a body without my scars because they have become part of who I am. It has taken lots of hard work not to let my injuries define me, and instead allow them to teach me valuable lessons. I have been in pain, so I can use that to empathize with others in pain. I have looked different for so much of my life that I can advocate for others who look different. I have persisted through 11 years of procedures, so I know I have enough determination to make it through anything. I remember the fear and isolation I once felt because of my injury. To anyone feeling the same way, I want you to know that this is not who you are. This is one of the many pieces that makes you the phenomenal human that you are,” she said.

In addition to Dr, Sheridan, Ella expressed appreciation for Matthias B. Donelan, M.D. “And of course, there is Dr. Donelan. I am so incredibly lucky to have access to a surgeon with his tenure and skill, and I cannot imagine how different my life may have become without his care,” Ella said.

“The Boston Shriners Hospital is a place not just of care, but also of innovation. The work that Dr. Donelan has done on laser treatment is helping transform lives and drive innovation. Donations to Boston Shriners [Hospital] are not just helping burn survivors; they are also helping advance research that could help others,” said Anthony. 

Anthony and Gretchen want parents going through similar experiences to know that they are not alone. ”On the night before Ella’s surgery, Dr. Sheridan sat with Gretchen and me and explained what was going to happen the next day. He said something that was so important but took some time to fully register for us. He said, ‘Ella is going to have a long happy full life. She will be fine, but she will be dealing with these injuries for the rest of her life.’ It rattled us a bit, because I recall thinking about the duration of that statement ‘the rest of her life.’ It seemed unfathomable in that moment – accidents can change everything in an instant. But he then said not to worry, that Ella would be cared for by the Boston Shriners Hospital team throughout her entire childhood. He offered that lifeline at our darkest moment. What a gift it was, to know we were not alone.”

Ella throwing first pitch at Fenway Park