Nine-Year-Old Mae Tapley Inspiring Nantucket's Marathon Runners
David Creed •
Shortly after Mae Tapley was born nearly 10 years ago in Washington D.C., her parents – Susie and Andrew – learned that their daughter had Down Syndrome. Approximately half of all individuals with Down Syndrome have a heart condition, which led to Mae being checked out at a D.C. hospital for any underlying health conditions.
“Everyone in D.C. told us her heart was healthy,” Susie Tapley said.
As a precaution, the Tapleys scheduled an appointment at Boston Children’s Hospital when Mae was four weeks old. The news that resulted from it shocked them as doctors informed the family that Mae needed to undergo open heart surgery almost immediately.
“We never expected to hear she had a life-threatening heart condition,” Susie said. “(The doctor’s visit) was part initiation, part luck, part divine intervention.”
Mae needed to reach a certain weight before undergoing the surgery. At five months old, she had the procedure, and then 11 days after the surgery, had a pacemaker inserted which required a second surgery. The family was in the cardiac ICU for 16 days.
The Tapleys moved to the island seven years ago and have made Nantucket their home. Mae is currently a fourth-grade student at the Nantucket Intermediate School and while there are day-to-day challenges the Tapleys continue to battle as a family, they say the support system they have on-island - combined with Mae’s strong spirit - makes those challenges easier to navigate.
“She is fully included inside of the Nantucket Public Schools and it is very, very rare for kids with Down Syndrome to be included inside of school, but she is fully embraced,” Susie Tapley said.
Over the winter, more obstacles arose. The Tapleys took Mae to have the batteries replaced in her pacemaker as they were reaching the end of their eight to 10-year shelf life. The doctors delivered some more unexpected bad news when they said Mae needed to have the pacemaker replaced – forcing her to undergo her third heart surgery within the first nine-and-a-half years of her life.
“We went in thinking it would just be a battery change, and it turned into Mae needing a whole new system,” Susie said. “She’s just this kid who is so unexpected where you think, ‘Okay it is going to go this way’ and then she says, ‘Oh no, it is going to go this way.’ Our medical journey with Mae has been filled with twists and turns. But over the course of 10 years, we have built an incredible community around Mae.”
In December, Mae developed pneumonia. It prompted the Tapleys to pull their children out of school and go down south for three weeks to help her recover. When they returned, her classmates surprised her with handmade cards and letters welcoming her back to school.
Her siblings Drew (sixth grade) and Ellie (second grade), also take great care of their sister. Susie said they regularly include Mae in activities and that their friends love being around Mae as well. Susie said when Mae went in for her third heart surgery this winter, Drew’s Nor’easters hockey team gave her a captain’s jersey, made her an honorary captain, and every player signed the jersey.
“Our story, is it complex? Yes. Has it been incredibly challenging and have there been moments of heartache inside of her medical journey? Yes,” Susie Tapley said. “But at the end of the day Mae is so beloved and so part of this community and so healthy and has deep friendships. That's all you can ask for.”
Mae was born on Marathon Monday and will turn 10 years old on April 20th, the day before the 2025 Boston Marathon. To celebrate Mae’s 10th birthday, Susie Tapley decided she was going to run the Boston Marathon for her. It will be Tapley’s second marathon as she ran her first nearly 20 years ago for, coincidentally, Boston Children’s Hospital. It was just under very different circumstances.
“I ran the Boston Marathon when I was in my 20s and I was paired with a patient partner,” she said. “This year Mae is the patient partner for each of us. But I remember being at the event before the marathon and being like, ‘Oh my Gosh. This is unbelievable. How do these families do this? This takes so much courage. I don’t know what I’d do if my child needed this place.’”
Once word spread, several of Susie’s friends told her they wanted to run the marathon for Mae as well.
“Some of my dear friends on Nantucket said they wanted to run it with me,” Susie said. “Five of us are running the Boston Marathon and one is running London. These are real people. They are special. It isn’t like this is some group of elite athletes. These are moms and dads who are juggling three or four kids, working, being a member of the community, have dedicated months of their time to training, and they all have their own special connection with Mae.”
One of those runners is Natalie Thompson, who has been working in the Nantucket Public School system since 2008 and plays an instrumental role in supporting island children in special education, including oversight of the island's Special Olympics event in recent years.
Thompson was one of the first island residents to meet Mae when she was two-and-a-half years old. Susie took Mae to the Community Pool to participate in a swimming session hosted by Nantucket S.T.A.R., an island non-profit that provides programs and recreation for individuals with special needs. Thompson, a former high school swim coach, saw Mae was nervous and wanted to help her become more comfortable.
“She was doing the S.T.A.R. swimming and she wasn’t even swimming with me but Susie came in with her and Mae at first was kind of like, ‘I don’t know about this,’” Thompson said. “So I basically was like, ‘Here we go kid. We’re going.’ From that day on, Mae and I have had some sort of special relationship and bond.
"As soon as you see her, you don't leave in a bad mood," Thompson continued. "She always puts a smile on your face. She's always got some little fun, sassy comment or something.”
Susie Tapley recalled that moment and said Thompson’s support came at a crucial time as she was still trying to navigate the challenges of having a child with a disability.
“I just went into the Community Pool and I was very nervous and very nervous about water,” Tapley said. “I was like, ‘Oh God, how is this going to go?’ Natalie came over and introduced herself and was so warm right away. She is so warm. Natalie and Cassie (Natalie’s wife) have become close friends of ours. I ran the Falmouth Road Race with Cassie. When Natalie approached me about running the Boston Marathon she said, ‘I’ve never run a marathon before, but I’ll do it for Mae.’”
Cam Gammill is another runner who has become close family friends with the Tapleys. Gammill, who is an avid fisherman and real estate broker, said he spends plenty of time out in Madaket (where the Tapleys live) and has gotten to know the Tapleys' children from coaching hockey. He said when the opportunity to run the Boston Marathon for Mae was presented, he couldn’t turn down the opportunity.
“I just got to know Mae through her family and she's really one of the most infectious people I know," Gammill said. "She just truly gives the best hug anyone will ever get. So when I'm welcomed with a hug from her every time I see her, it's hard to say no to someone like that.”
Island resident Erin Myers has four children of her own and has a strong passion for running. She will also be running for Mae this year and said she has developed a close relationship with the Tapley’s through sports.
“Our kids all play sports and go to school together, and just meeting Mae and the whole Tapley family has been so inspiring,” Myers said. “You could not have gotten a better match for a family in terms of parents and children. They’re incredible. I grew up around Boston, so I think I take Children’s Hospital for granted. Everything they offer is amazing. So when Susie said she wanted to raise money for Boston Children’s I was like, ‘I’m in.’”
Jennie Cook has a 10-year-old daughter in Mae’s grade and an eight-year-old daughter in Ellie’s grade. She has also grown close to the Tapleys and said it was a no-brainer to run the marathon for Mae.
“We have kids all around the same age and that just kind of brought us all together,” Cook said. “I had run for Boston Children’s Hospital before in the New York Marathon and so it has always been close to my heart. I think it is pretty incredible that Mae, who will be 10, has inspired so many adults. She has taught all of us so much. We are all doing this for Mae, but she has taught all of us so much like just to stay positive. It is so touching, and she doesn’t even know she is doing it.”
Kezia Duarte will be running the London Marathon on April 27th and said it will be her first-ever marathon. She ran six half marathons in the past three years and when she decided to run in London this year, she learned quickly that running for Boston Children’s Hospital and for Mae was an easy choice.
"My brother's been up there twice in his life once for his leg and another time for his arm and I as a nurse have always really respected the time and energy that they put in towards our medical care as an island and as a community,” Duarte said. “I got to meet Mae for the first time, and she is such a whipper snapper dude. Oh my goodness. I am obsessed with her. She has this hysterical little spunk and such a fun, vibrant attitude. She's just a ray of sunshine.”
The Tapley’s hope that as time goes on, Boston Children’s Hospital will expand their presence on the island and invest more pediatric resources on Nantucket to make it easier for families to bring their children in for doctor’s visits and receive the exemplary care the hospital provides. Susie Tapley has raised over $36,000 and is one of the top five marathon fundraising leaders for Boston Children’s Hospital as of April 1st. She is hoping the money raised and the support the island shows for Mae will lead to an expanded partnership between the Children’s Hospital and Nantucket.
"The fact of the matter is that without Boston Children's Hospital, she would not be here," Tapley said. "We would not have had the last 10 years with this kid, and we need Boston Children's for the next 10 years. We are lifelong patients.”
You can donate to Susie Tapley’s fund here.
You can donate to Natalie Thompson’s fund here.
You can donate to Erin Myers fund here.
You can donate to Jennie Cook’s fund here.
You can donate to Kezia Duarte’s fund here.
You can donate to Cam Gammill's fund here.
