Sunday, May 3, 2015

Windham family partners with marathon runner to raise money for Boston Children's Hospital - By Elizabeth Richards

Last week, Massachusetts runner Heather Mastrangelo ran the Boston Marathon as a patient partner for Kayla Collins, a 13-year-old Windham seventh grader. The Collins family was present at the finish line to cheer Mastrangelo on.

The partnership came about as part of the Boston Children’s Hospital Miles for Miracles fundraising program, which matches runners with children who have been treated at Boston Children’s Hospital. The hospital has an overall goal of raising $1.7 million at the Boston Marathon. Together, Collins and Mastrangelo raised nearly $9,000.

This year, the hospital had about 200 runners, and 126 patient partners. It can be difficult to find patients to pair with runners, said Kayla’s mother, Trista, because the medical challenges faced by the families can be overwhelming. “It’s a lot to ask the family as well as the patients,” she said, “It was a really difficult thing to do but I’m really thrilled that she wanted to do it.”

Participating in the Miles for Miracles program was a way for their family to give back to an institution that has done so much for her child, said Trista. Kayla has been treated at Boston Children’s Hospital since the age of three, visiting at least once every six months. 

“They make you feel like your child is the only patient,” said Trista. “The treatment she’s had is just incredible.”  Fundraising for the marathon allowed the Collins to show just how much they appreciate the hospital. “You can tell people how much they’ve done for your kid, but we can’t really ever express the depth of our gratitude. Her life is forever changed,” said Trista.

Kayla was originally diagnosed with autism and the Collins family was told she would never walk or talk, or be able to function independently. The family found themselves seeking a second opinion at Boston Children’s Hospital, where after a full range of testing, doctors determined that she did not, in fact, have autism. Instead, she was the third person in the country to be diagnosed with a rare chromosome disorder called 7q11.23 duplication. To compound matters, last fall it was discovered that Kayla also has a heart condition.

None of that has slowed her down, however. After receiving extensive therapies when she was young, Kayla thrived and is now an active 7th grader who likes to play field hockey, soccer and participate in Girl Scouts. Though the recent diagnosis of her heart condition made her pause, she’s been cleared to play soccer again this spring.

The early intervention made a huge difference, said Dave Collins, Kayla’s father. “There are other kids that are similar age to Kayla in the same study that didn’t get the same early intervention and they are well behind,” he said. 

Before the marathon, the hospital held a brunch for the runners and the families they were partnered with. At this brunch, the Collins family heard amazing stories of patient’s challenges as well as about the long term relationships some of the children have built with those running in their honor.

The day of the marathon was a lot of fun, Kayla said, despite the fact that it rained all day. Watching the runners was a powerful and touching experience, and also an opportunity for their family to be together doing something fun, Trista said. Kayla’s brothers are close in age to their sister, and have seen a lot of the challenges. “This was something they could be involved in, and at the brunch they realized that there are other families going through this. For them it was huge,” Trista said.

The Children’s Hospital runners all wore a special checkered bib, making them easy to identify as they passed. When Mastrangelo saw Kayla at the midway point, she stopped to hug her, and then kept on running. After seeing her pass, the family made their way to watch her cross the finish line. Being at the finish line was a crazy, amazing experience they all said. “I’m glad that Kayla was able to be a part of something that is just bigger,” said Trista.

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