Parents Run for Their Children in Boston Marathon

This entry was posted in d-Tales, High Hopes Fund, Patient stories and tagged , , . Bookmark the permalink.
458201_199333740180558_53982508_o-548122260c46a

Chris Jylkka and Lila, who was diagnosed with type 1 diabetes and celiac disease

Support Team Joslin on Crowdrise

Today, April 20, around 32,000 running enthusiasts will tackle 26.2 miles to the finish line of the Boston Marathon. Among these participants will be the 17 members of Team Joslin, a group of dedicated people wishing to give back to Joslin Diabetes Center. Among these athletes are three parents whose lives have been in some way touched by diabetes and by Joslin: Chris Jylkka, Olivia Johnson, and Bridgett Olson-LeFave.

Running comes naturally to Chris Jylkka, who was captain of his high-school cross country team. He completed his first marathon 20 years ago. Now, with multiple 5K race experiences and six months of training under his belt, he will be running the Boston Marathon for his daughter, Lila, who was diagnosed with type 1 diabetes and Celiac disease in the fall of 2014.

 “The last six months have been challenging and enlightening,” said Jylkka. “I have learned a lot of training techniques and ways to improve my health and have met some new, great, and inspiring running friends.”

Lila, 10, is “a spitfire with a great imitation of Jim Carrey’s Grinch,” says Jylkka. She loves ski racing, horseback riding, lacrosse, and sleepovers with her girlfriends. This past fall, Lila went for her routine check-up and high levels of glucose were found, leading to her double diagnosis. “We were emotionally devastated,” said Jylkka. “Being a parent of a normal child can make you sick with worry. Having a diabetic child you worry that much more.”

Joslin helped put the Jylkka family’s minds at ease when they sent a Joslin nurse to educate the staff at Lila’s afterschool program, teaching them the safety and emergency protocols for a child with type 1 diabetes. “The event was well attended and the educator was phenomenal,” said Jylkka. “She was a true professional.”

Jylkka chooses to run in hopes of finding a cure for Lila one day. “She stood up in her class one Friday and announced she had diabetes and explained to everyone how her pump works,” said Jylkka. “I am biased but she is an amazing 10 year old.”

WickedStrong-5487f5b7ea7c7

Olivia Carter and Hayley, who was diagnosed with type 1 diabetes

Like Jylkka, Olivia Carter runs for her daughter, Haley. After a sick visit to the pediatrician, Carter and Haley were sent to Joslin to confirm her diagnosis of type 1 diabetes. “It’s every parent’s worst nightmare, having a child diagnosed with a chronic illness,” said Carter.  “We were in shock.”

Carter joined Team Joslin because she believes it’s a great way to give back. “There was such a reassurance from the Joslin staff.  We saw people from nutrition, child life, and social work, and I felt like there was a plan in place and that we were going to be okay,” she said. Carter credits Joslin’s “cutting-edge care” with Haley being complication-free since her diagnosis on January 14, 2013.

Being the parent of a type 1 diabetic comes with many responsibilities, and sometimes makes training for the marathon difficult.  “It’s a full time job,” Carter says about caring for Haley’s diabetes. “I often tell people it’s like having a newborn again.  You’re scared, you’re sleep deprived, and things change very quickly!” Whether checking to make sure Haley’s glucose levels are staying in range over night or staying local during the day in case the school nurse needs help with Haley’s diabetes care, Carter is always “on-call, but happy to do it,” she said.

Haley is a first grader who loves reading and writing her own stories, and her pre-competitive gymnastics team. “She is very funny and sweet and caring,” says Carter. “I’m so lucky!”

Carter has run one other marathon and more than 40 different races in her life, including one dressed as Rapunzel complete with a three foot wig. She likes to run because it’s a way to spend time with her friends and gives her an excuse to dress up in costumes. “It’s a bucket list thing,” she says about running the Boston marathon. “Doing this gives it such a special meaning,” she said. “ I’m giving back to the place that allowed my daughter to be a normal kid.”

Bridgett Olson-LeFave has type 1 diabetes and will be running to show appreciation for all Joslin has done for her, including helping to bring her baby girl Frances into the world. “She is my love, my life, my everything! I have never felt love like this before,” said Olson-LeFave. “She’s healthy, she’s funny, she’s expressive, and she’s everything I’ve ever wanted.”

mommouse-551544be875d2

Bridgett Olson-LeFave, who has type 1 diabetes, and baby Frances.

Olson-LeFave has been a Joslin patient for 22 years and Joslin has continued to help her manage her diabetes while being a mother. “Sometimes it’s very hard to take the time to test my blood sugar or eat the right things when I have a child who is crying or who needs to be fed herself,” said Olson-Lefave. “I tend to put her needs before my own. But then there’s that little voice in my head that says ‘Bridgett, if you don’t take care of yourself, you can’t take care of Frances!’”

The Boston Marathon will be Olson-LeFave’s first marathon. “I’m tremendously excited and honored to run this marathon, especially for Joslin! I have run several half marathons before, but this will be my first marathon,” said Olson-Lefave.

Exercising with diabetes can be tricky, especially when the exercise entails 26.2 miles of running. Joslin’s Ed Horton, M.D., Senior Investigator in the Section on Clinical, Behavioral, and Outcomes Research at Joslin, has researched management of diabetes while exercising for many years. Dr. Horton was a key player in making it known that people with diabetes, like Olson-LeFave, can run marathons like anyone else.

“I was involved in the development of the International Diabetes Athletes Association (IDAA) in the early 1980s, which later evolved into the Diabetes Exercise and Sports Association (DESA),” said Horton. “We were very active in breaking down barriers for people with diabetes to participate in sports. One great success was making it possible for people with type 1 diabetes to participate in marathons where having diabetes was often an exclusion and people had to hide the fact that they had diabetes in order to register for the events.”

Jylkka, Carter, and Olson LeFave all run to give back to Joslin, the place that greatly influenced their family. “Joslin has taught me that I’m not defined by my condition but that I define diabetes, said Olson-LeFave. “Joslin has opened doors that I never dreamed would be opened in my life. I have traveled the world, I have a beautiful baby daughter and now I’m running the Boston Marathon! I need to give back to Joslin so I’m running for them. It’s only a small token of appreciation for all they’ve done for me.”

Leave a Reply

Your email address will not be published. Required fields are marked *