CHS alum dedicates marathon to classmate’s daughter

Cynthia and Paul Dorsey were thrilled with the birth of their daughter, Ella Claire, in March of last year. A few days after she was born, Paul drove to the hospital to take his family home. Cynthia had been approved for discharge and was talking to a nurse as a pediatrician checked out the baby. As Cynthia spoke with the nurse, a second pediatrician entered the room and examined Ella, looking at her head, turning it, and looking at it again. Then the doctor approached Cynthia.

Jim Gaspa and Ella Claire

“I think your daughter has Craniosynostosis,” she told Cynthia. “You can’t leave.”

Ella Claire Dorsey was born with Sagittal Craniosynostosis. On its website, the Mayo Clinic explains that one of its characteristics is the premature fusion of the suture at the top of the head (sagittal suture), which forces the head to grow long and narrow, rather than wide. As Cynthia Dorsey put it, there was no room for Ella’s brain to grow.

“I had never heard of this word,” she said. “I was completely uneducated. I was devastated.”

Ella remained in the hospital, where two medical fellows from Boston Children’s Hospital examined her. They returned to do a second examination with Dr. Mark Proctor, a pediatric neurological surgeon from BCH, who made the official diagnosis of Ella’s condition.

He explained to the Dorseys that he would perform an endoscopic procedure on Ella in which he would remove a piece of her skull. The operation was to take about three or four hours, and afterwards she would be fitted with a helmet to protect her head as she grew.

“He reassured us that she would be fine,” Cynthia said. “He was very positive.”

Ella weighed six pounds, but was not going to undergo the procedure until she weighed twice that amount, in case she needed a blood transfusion.

Ella had the surgery on June 23. Six days later she went home wearing a helmet that would cover her head for 23 hours every day. Cynthia said that the first few days were rough, but Ella, her parents and three sisters, Abigail, Carissa and Ava, grew used to the routine.

Ella’s recovery and her development moved ahead smoothly, so her family decided to hold a fundraiser, called Ella’s Journey, at the Turnpike Café last September to raise money to help others who have Craniofacial or Craniosynostosis conditions. “We were so fortunate to not have to travel to Boston,” Cynthia said.

The Dorseys raised enough money to help families from Oregon and North Carolina travel to BCH for treatment, cover some of the college expenses of a young adult with Craniofacial Chiari Malformation, and donate money to the BCH Craniofacial Unit.

Jim Gaspa attended Ella’s Journey. He and Paul Dorsey are members of the Canton High School Class of 1986. He has remained friends with Paul and learned about Ella Claire through postings on Cynthia’s Facebook page, Cranio Strong. Gaspa was a three-season athlete at CHS, running cross country, indoor track and spring track for four years.

“I ran in high school, then took the rest of my life off,” he said. “About five years ago, I lost weight and started running again.”

Gaspa qualified for the 2015 Boston Marathon after running the Hyannis Marathon in 2014. At the fundraiser, he told the Dorseys that he did not need to raise funds to run, but wanted to do it to raise awareness of Craniosynostosis and funding for the BCH Neurosurgery Leadership Fund. “I’m running on behalf of Ella and her friends,” he said.

Gaspa has a webpage through the BCH Trust and is running as part of the Miles for Miracles team. He has set a goal of $2,000, which he is close to reaching, but hopes to raise even more money. He knows some of the donors, including classmates from St. John’s School and former co-workers, while others are strangers. He’s grateful for the support for Ella.

BCH gave him a singlet to wear on April 20 as he runs from Hopkinton to Boston, and he won’t be running alone. Cynthia is decorating the singlet with a collage of photos of children with Craniosynostosis. Ella’s photo will be on the front. “She’s the headline,” Gaspa said.

Ella Claire Dorsey no longer needs to wear the helmet. She started to walk four weeks ago. Her mother worried about her progress. “Is the helmet going to hold her back?” she said.

Then she answered her own question. “Nothing’s going to hold her back.”

Ella’s sister Ava is holding a fundraising bake sale for Craniosynostosis after the masses at St. Gerard’s on April 12. To support Jim Gaspa as he runs, visit his fundraising page at Boston Children’s Hospital Trust.

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Posted by Mary Ann Price on Apr 3 2015. Filed under Features. Both comments and pings are currently closed.