Among the 30,000 or so runners crossing the finishing line of the New York City Marathon Nov. 7 was Smithtown resident Julia McNeill, who was running not only for herself but her sister Caroline. The 26-year-old said in a phone interview before the event that her goal was to not only complete the race, but also to raise awareness about Marfan syndrome and raise funds for The Marfan Foundation. The genetic condition is one that affects her sister.

McNeill took part in the race, her first marathon, with a team of eight others, which included members from all over the country and one from Amsterdam. Each of the team members has a loved one who has Marfan or other related genetic aortic and vascular conditions. Caroline McNeill, 23, was 3 years old when she was diagnosed with the genetic condition. Marfan affects Caroline’s body’s connective tissue and has resulted in lifelong cardiac concerns.

Julia McNeill said even though this past Sunday was her first marathon, she has always been athletic and played softball for Hauppauge High School and in college.

“I always liked running,” she said. “It was always on my bucket list to run the marathon, and I figured why not do it for a good cause, raise awareness and educate people about it and just reach as many people as I can.”

Before the race, McNeill, who is a Stony Brook University Hospital nurse, said she surpassed her fundraising goal of $3,000 and credits her family for the fundraising support. As of Nov. 10, she had raised more than $6,200, and the fundraising page is still open for donations on the Marfan Foundation website.

She originally planned to run in the more-than-26 miles marathon in 2020, but it was canceled due to COVID-19. McNeill said she was training last year and then stopped running for a while and just continued working out regularly at a local gym. Once the summer hit this year, she started training hardcore again for the marathon. She soon found she could run 21 miles, even though it was difficult at first.

“It’s nothing like a game of softball,” she said. “A softball game lasts, what, an hour and a half?”

Training included running four days a week, and one of the days was for long-distance running. She said at first those long-distance runs were less than 21 miles. In the beginning of training, McNeill could complete six miles, then each week the distance would increase. She hit her peak four weeks before the big day.

Sibling bond

McNeill said she was only 6 years old when her sister was diagnosed so she doesn’t remember much, but the elder sister said she recalls being checked out by a cardiologist as the whole family needed to be evaluated to see if they also had the genetic condition.

‘It was always on my bucket list to run the marathon, and I figured why not do it for a good cause, raise awareness and educate people about it and just reach as many people as I can.’

— Julia McNeill

Like others with Marfan, the odds are her sister may need open heart surgery one day. Caroline McNeill, who is more than 6-feet tall and thin, which are symptoms of the condition, said throughout her life people have always been curious about her build and asked questions such as, “Do you play basketball?” or “Why are you so tall?”

The younger sister said while Marfan affects her, she doesn’t see her life being that much different than others.

“I see it as I have Marfan syndrome, but I’m able to excel in all these other areas as a result,” she said. “You know, other kids don’t play sports, not because they have conditions or heart conditions. It’s just that they don’t like sports, it’s not something they excel at.”

She added when she was younger she found interests outside of sports, and she belonged to the art club in high school and loved going to concerts with friends and supporting her sister at games.

“It’s not anything that’s going to impede you or restrict you in any way, but it’s just going to create new, and sometimes even better, opportunities,” she said.

Caroline McNeill, who is currently studying to become a speech pathologist, added she’s not sure what her life would be like now if she didn’t have Marfan and believes it played a role in her choosing a career in the speech field.

“I don’t think I would be as empathetic toward other people, because I know how I want to be treated, and I want to make sure that other people are treated the same way,” she said.

Julia McNeill describes her sister as “the most intelligent, kind-hearted, down-to-earth person” she knows. McNeill added her sister also has had the strength to overcome any obstacle she met and is her role model.

“She goes above and beyond in everything, and the least I can do is train for four months and do something, just make more awareness and everything for her condition,” she said.

The admiration is mutual. Caroline McNeill said that Julia has always been her protector, and she couldn’t ask for a better sister or sibling relationship.

“I feel like that’s a common theme of us both being like, ‘Oh, you’re my inspiration,’ ‘But no, you’re mine,’” she said.

Caroline McNeill said she was proud of her sister and knew she would complete the marathon based on her athletic abilities.

“She’s a born-and-bred athlete, and the fact that she wanted to do it and run for The Marfan Foundation just made it that much more special,” Caroline McNeill said.

The big day

In an email after the marathon, Julia McNeill said she completed the race in 4 hours, 53 minutes, 23 seconds. She made it just under her goal of 5 hours. Cheering her on were her sister, parents, grandmother and boyfriend, who met her four times along the route to refill her water pouch and help her refuel with bananas.

She said running through the city was like nothing she has experienced before.

“The energy from every single person was like no other,” McNeill said. “Every single block you would turn, there would be people lined up shoulder to shoulder just screaming at the top of their lungs cheering you along even if it was mile 1 or mile 26.”

She said many people along the way would hand out tissues for chilly or runny noses, and even offered bananas and orange slices.

“I just felt so much support from thousands of total strangers,” she said. “It was without a doubt the greatest experience of my life.”

To contribute to Julia McNeill’s fundraising efforts, visit the website give.marfan.org/fundraiser/3351331. The money raised goes to The Marfan Foundation’s mission to advance research, raise public awareness and serve as a resource for Marfan syndrome, VEDS, Loeys-Dietz syndrome and other genetic
aortic conditions