Kelly Nykaza’s life was turned upside down when her daughter, now 8, was diagnosed with Type 1 diabetes. Together with friends she calls “the Mahomet D-moms” — other moms whose children are living with Type 1 diabetes — last year the group raised $20,000 at its Miles of Hope to Cure Type 1 Diabetes fundraiser. (Proceeds from Miles of Hope benefit the The Faustman Lab at Mass General in Boston). Now in its second year, the event — a 2-mile walk and a 5K run — will be held Oct. 13 at Lake of the Woods. Registration can be found at http://milesofhopetype1.
See why we think Kelly Nykaza is a Chambana mom to know.
Q: What are the daily challenges you face having a daughter with Type 1 diabetes, and how have you adapted?
A diagnosis of Type 1 Diabetes is an enormous change for the entire family. Leah was diagnosed just a few weeks before her 5th birthday, and we were suddenly thrown into a world of carb counts, insulin injections, and finger pricks every few hours to check blood sugar. At an age where she might have normally started gaining more independence, we had to do the opposite out of necessity for her health. Blood sugar is affected by so many things–activity, growth, illness, food, hormones—it becomes your new normal to react and adapt to every situation, day by day, and hour by hour.
As she has gotten older and more involved in her own care, we can gradually give back some of that independence. Normal, everyday situations still always require a plan. Whether it is school, play dates, or other activities, it would be dangerous for her to go somewhere without the right supplies, snacks, or with someone who doesn’t know how to help her in an emergency. Kids with Type 1 can do anything other kids can do—they just need a little more planning to stay healthy and safe.
Q: How did you amass such a community of other moms/families in the same boat as you, and how has this group helped each other?
Thankfully, I’ve met some wonderful families in Mahomet where I live who also have children living with Type 1 Diabetes. It’s so important to have support when affected by a chronic illness that can cause so much stress and uncertainty in your life. As moms, we rely on each other for ideas, advice, and just as a way to vent about the struggles our children face each day.
Our kids have gotten to know each other too, and it’s great for them to know they are not alone. There is no cure for Type 1 Diabetes, and they never get a break from the physical and emotional demands of the disease. By organizing Miles of Hope together last year, we were able to show our kids how many in the community care about them and want the best for their lives. It is a family-friendly event that gives us a chance to educate their friends and the community in a positive way!
Q: If I’m a parent with a child who has been diagnosed with Type 1 diabetes, what are the local resources to tap?
I feel it is so important to connect yourself with others going through the same situation. We’re always welcoming new families that would like to be involved with Miles of Hope! We’ve gotten to know some great families outside of Mahomet as well. JDSci is a local support group that meets at Carle each month, and the local chapter of the ADA has some great resources as well. Leah went to overnight diabetes camp for the first time this summer and it was an amazing experience for her!
We were absolutely overwhelmed by the support we received last year! When we started planning, we knew we wanted to raise awareness for our kids, and donate to research that we believed in at the same time. We were astonished as we totaled our donations that day! This year we have added a 5k run in addition to our 2-mile walk, in the hopes of attracting an even bigger crowd. We hope to reach the $20,000 mark again, and are thrilled with the level of support we’re already receiving! Online registration is available at milesofhopetype1.blogspot.com. We encourage people to run, walk, or donate however you are able! We’re hoping for another beautiful Fall morning at Lake of the Woods.
Q: Other than the obvious what is your biggest parenting challenge right now?
I’m sure it’s the same thing as many families—finding the balance of work, family, and the hobbies or interests you enjoy in life. All while trying to make sure your kids are happy, healthy and becoming the best people they can be!
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