SAUGUS – For five years, Emily Spadafora has been running to find answers for her daughter.
The Saugus native and current Somerville resident has a five-year-old daughter named Harper with her partner, Mark Canty. She is a happy, positive little girl obsessed with Disney princess movies and her trampoline.
“She is just such a light,” said Spadafora. “We are so lucky to have her. She has taught me so much in the last five years.”
Harper’s journey hasn’t been the easiest, though. She was born in the beginning of February 2020, and for the first two weeks of her life, everything was blissful and perfect. It was everything that Spadafora and Canty had dreamed about for their first child.
Then, things changed quickly, and Harper’s parents noticed she was struggling to breathe, only taking rapid breaths. Spadafora said they immediately called Harper’s doctor, who suggested they get to the emergency room as soon as possible. They ended up admitting her at Boston Children’s Hospital.
The doctors ran every test and panel they could find, according to Spadafora. Everything continued to come back negative, but her oxygen wouldn’t stop dipping. They tried to give her medicine, but it wouldn’t work. She was getting worse.
Harper had 120 breaths per minute, which is extremely unsafe for newborns, Spadafora said. The family ended up keeping Harper in the ICU for 25 days in an attempt to figure out what was wrong with her oxygen levels.
“A doctor told us verbatim, ‘Picture somebody that just ran a marathon and how out of breath they are and winded. This is her breathing all day long, but as a newborn’,” Spadafora said. “We were scared she would stop breathing.”
“I was a disaster,” the 32-year-old mom continued. “It was hard. Friends and family were also having babies at the same time. I just kept asking, ‘Why me? Why us?’.”
With every test the doctors ran on Harper, they found a new issue, but no answers. They found fluid in her brain, a hole in her heart, and a tethered spinal cord. After many weeks of testing, the doctors sent Harper and her family home with an oxygen tank for her to wear while she slept and when her oxygen dipped.
Harper is now five years old, still with no answers and now non-verbal autism, but the doctors over at Boston Children’s have not given up on helping. They continue to monitor Harper closely, and they even enrolled her, Spadafora and Canty into a genetic research program in the hopes of one day figuring it all out.
“They think everything is genetically related and could be a syndrome,” Spadafora said. “They said if they find something, they will call, but they nicely told us not to hold our breath.”
But, Spadafora hasn’t just been sitting and waiting for answers. No, she has been running marathons and raising funds for Boston Children’s Hospital. She has created so much advocacy and spread the word about so many families just like hers that she was just given the Impact Award from Boston Children’s Hospital.
“I could have sat in my grief and pity and just felt sorry for myself,” she said. “But I feel like I turned it into something beautiful by just continuing to give back.”
Since 2020, she has raised $35,000 for Boston Children’s Hospital. She has run the Boston Marathon almost every year, made friends with moms who have shared a similar path and has become a cheerleader for caregivers and families all over. She also participates in the hospital’s Eversource Walk every year.
“When we were in the hospital, they [Boston Children’s] didn’t just take care of Harper. They took care of us,” she added. “We were helped because they could do it with the means from the funds people have raised.”
Spadafora said she has found such a light by giving back to the hospital. When she first took to social media five years ago to share Harper’s story and get donations in, she never thought it would have turned into such a community.
She will be running the Boston Marathon and participating in the Eversource Walk again this year to raise even more funds.
“This is not how I thought motherhood was going to be. Don’t get me wrong, I still have hard days and a lot of grief from everything Harper has been through and everything she continues to go through, but I also have gratitude for how well she is doing,” Spadafora said. “I know at first I said, ‘Why me?’ and ‘Why us?’ but looking back now, I say, ‘Why NOT me? Why NOT us?’.”
