Kayla’s hopes and gratitude raise funds for medical research by Elizabeth Richards

Kayla (far left) with her parents David and Trista and brothers Bradley (front center) and Tyler photo by Natalie Berry

Over the past four years, Kayla Collins and the runners she has been partnered with have raised slightly over $62,000 in the Miles for Miracles Program for Boston Children’s Hospital (BCH). On Monday, April 16, Kayla and her family travelled once again to the halfway point at the Boston Marathon to cheer on Julie, Kayla’s runner in the 2018 race.
 

It was a frigid day, with cold driving rain. Julie danced her way down the sidewalk at the cheering section where Kayla and her family waited but was unable to finish the marathon due to hypothermia.  

This Sunday, the Collins family will travel to Boston once again, to cheer on Julie and a dedicated group of charity runners as they run the full course again. What began as a simple Facebook invitation to join her in re-running the course, posted by a runner for BCH who was unable to finish the race, has turned into “Boston 2.0” complete with water stops, medical support at the halfway point, and spectators.

Kayla has been part of the Miles for Miracles Program for four Boston Marathons, two New York City Marathons, and a couple of other running events. Although patients are not required to do fundraising, the Collins family is committed to giving back to the hospital that has done so much to make their tough journey a little smoother.  

Kayla said she participates in Miles for Miracles to help fund research, get the answers they need, and to help other kids.

David added, “It may not personally help Kayla or our family, but it could help others down the line. We do what we can to give back to the hospital, because the doctors and nurses, and all the staff, have helped us so much.”

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This year, Kayla set a fundraising goal of $1500, which she exceeded by almost $500. Julie, who must raise at least $3000 to participate, raised close to $12,000 this year. Last year, Kayla raised just over $2000 as well, making her the top patient partner fundraiser.  This year, however, patient fundraising took off, with the top patient partner raising over $15,000, David said.  According to the BCH website, the overall goal this year was $2,150,000 and they have raised $2,334,370.74 to date, well exceeding that goal.

Boston Children’s Hospital is where Kayla finally got a proper diagnosis for her rare genetic condition. At the age of 2 ½ years, she wasn’t walking or talking, but the diagnosis of severe autism that her parents were first given at another hospital didn’t feel right, despite being confirmed by the head of the department. David said they could see connection in Kayla’s eyes, even though she wasn’t able to communicate with them.  

In seeking a second opinion at BCH, they met Dr. Lisa Prock, who agreed that Kayla did not have autism. Dr. Prock helped the family navigate testing and specialists until they finally had an answer – one so rare, it doesn’t even have a name.

           

Kayla was the third person ever to be diagnosed with 7q11.23 duplication, and there are still only approximately 300 diagnosed cases of this condition, David said. Once the Collins had an accurate diagnosis, Kayla was able to receive extensive early intervention, which has allowed her to thrive. But there are still many challenges Kayla has faced over the years, including the discovery that she has an enlarged aorta. 

“Right now, we’re waiting for science and research to get to the place where the team can give us a new treatment option that they’ve never attempted to do before for a patient with her combination of conditions.  In the meantime, every day is a challenge for her, but you would never know,” said her mother, Trista, in a press release. 

In many ways Kayla is a typical 16-year-old student. Kayla is a sophomore at Windham High School, has her driver’s permit, and played on the JV field hockey team at WHS. Kayla said she also plays tennis, and plans to audition for “The Little Mermaid” at the high school this spring. She also has a big future goal: to attend St. Joseph’s College, major in biology and become a veterinarian. 

“Twelve and a half years ago, we never dreamed this was even possible. Without the care she’s received from a very dedicated group of medical professionals at Boston Children’s Hospital, she would not be doing what she is today,” said Trista.

David said, when they are at BCH for appointments, it is as if they are the only family there. This undivided attention is just one of the reasons the Collins family is dedicated to participating in the Miles for Miracles Program.

The family travels to BCH every two or three months for Kayla’s tests and appointments. They often make this required travel into an opportunity for family time, spending an afternoon with Kayla and her two brothers at the Science Museum, Aquarium or other Boston attractions after Kayla’s appointments, David said. 

“We’re incredibly proud of Kayla for her wanting to do something to give back to the hospital that is researching and working to save her life. These are not easy days for Kayla, but as a family, this gives us hope, and a way to do something small for the hospital that is saving us,” said Trista.

Kayla Collins raises money to help all children at Boston Children's Hospital - By Michelle Libby

Kayla Collins is a typical teenager, excited about entering high school, sort of, active in sports, and rolls her eyes at her brothers, except for the fact she has a rare combination of disorders that put her in a category all on her own.

Kayla was chosen to be the Maine patient from Boston Children’s for a June fundraising campaign at Shaw’s. From the literature, this is Kayla’s story. “A misdiagnosis at her local hospital placed two-year-old Kayla in a tragic position: She would never walk, talk, or function properly. A second opinion at Boston Children’s changed the entire trajectory of her life. Kayla in fact had a rare chromosome disorder—one of less than 500 known cases. A multi-disciplinary team of doctors immediately involved Kayla in state-of-the-art therapies, and connected her with their national network of specialty doctors. Over time, Kayla advanced—she walked, she talked, she started school, and experienced the milestones every child should. Now 14, Kayla will always be a steady patient—but more so, she’s a student and soccer aficionado, with dreams of becoming a veterinarian.”

Kayla and her family are committed to raising money for the Boston Children’s Hospital fund for families who are patients of the hospital. She is the State of Maine Patient Representative helping to raise a lot of money for the hospital in the last two years. Recently she did a radio interview for a Boston station with other patients, which raised $600,000 in two days. She also raised money in partnership with Shaw’s last month. Kayla is the daughter of Dave and Trista Collins. Fundraising has become a family affair with Kayla’s parents and two brothers, Tyler, 13, and Bradley, 11, also getting involved.

 “Some of the kids are too sick. This is a way we can help out,” said Trista. “Annually, they treat quite a few kids from Maine,” she added. 

“We are willing to help out with anything,” said Dave. 

From raising money with the Boston Marathon to now having three patient partners at the New York Marathon who will run in Kayla’s honor, Kayla is one of the top fundraisers for the Children’s Hospital Trust. “The goal is to raise money for the hospital and kids. They usually give families money for gas, meals and hotels,” Kayla said. 

The patients are also given special treatment like tickets to the Museum of Science and the opportunity to meet celebrities and legendary sports figures, when they are around the hospital. 

“They treat the kids like rock stars,” said Trista. From the valet parking to the exceptional care, the Collins’ rave about the hospital. 

Trista loves to go to the various fundraising races. Last weekend at the Tri-for-a-Cure in Portland, Trista stood at the finish line in tears. “There are stories behind every face you see cross the finish line,” she said. “It’s more about the hospital than anything.” 

The family was relieved to work with Boston Children’s Hospital’s Developmental Medicine Unit, when Kayla was first diagnosed. “Our first visit with Dr. Lisa Albers Prock was the beginning of a new life for Kayla, and for our family.  Within a few weeks of that first visit, we found out that Kayla did not have autism but instead has a rare chromosome disorder called 7q11.23 duplication.  She provided us with additional diagnoses and treatment options that we had not tried,” said Trista. Kayla is only the third person in the world with the chromosome disorder. While at the hospital the patients are given 150 percent care from the doctors. 

“They give their full attention, all the time,” said Dave. 

Doing all the fundraising is a way for the family to deal with the constant worry over Kayla’s condition. “While waiting for answers, it’s something to focus on,” said Trista.  

Kayla returns to the hospital every three months. “We stop at Sonic on the way back. They have the best shakes,” Kayla added. 

“We recently found out that in addition to her genetic condition, Kayla has heart and brain conditions as well.  While we wait for further testing and try to come to terms with what that means, we know that Kayla is in good hands,” said Trista. 

Trista said she doesn’t expect that her friends and family will donate every time she posts something on Facebook, but they are grateful for those who do. “They are incredibly generous and giving,” she said of her friends and family. 

“Within minutes of posting the radio recording, donations went up,” said Dave. “We certainly have benefited from that stuff.” Kayla receives experimental medications that have only been tested on mice before her. 

“There’s no one else with her combination of issues,” Trista added. “She’s the only one identified. It’s the combination that’s the problem.” 

When people ask Kayla if she’s going to die, she shakes her finger at them, “no, no, no, not today.”

She loves soccer and will be on the field hockey team in the fall at Windham High School. Although she can only do two to five minutes of strenuous exercise per week, she is excited to be on the team. Kayla is also involved in Girl Scouts, enjoys drawing, painting, cooking and baking.  

For more information about donating to Boston Children’s Hospital or Kayla’s story, visit http://fundraise.childrenshospital.org/site/TR?px=1305688&pg=personal&fr_id=1470.