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.