Thriving in the New “Normal”: Connecticut Teen Helps Kids Move Past Diagnosis

Meet Daily Point of Light Award honoree Saige. Read his story, and nominate an outstanding volunteer or family as a Daily Point of Light.

No one hopes their 17-month-old child will run into health issues, but the unfortunate reality is that many do. Thousands of kids under the age of 20 are diagnosed with type 1 diabetes (T1D)—once known as juvenile or insulin-dependent diabetes—every year. Saige Merwin, now 18, is one of them.

Determined to contribute to the T1D community, Saige’s family has been fundraising and raising awareness about the disease.  Since 2008, they’ve raised over $100,000 for different nonprofits. And in 2019, inspired by her son, Saige’s mom founded Elbowbumpkid, named after the way Saige greeted people in an effort to avoid the spread of particles that would set off his severe food allergies. As he said, “It’s not like you can get food on your elbows.”

Saige was a volunteer from the very beginning but was elected to the five-person board of directors when he turned 16. The organization offers support groups for parents, educational events, family game nights, pottery classes and outings like Red Sox games or a lake day. They also put on a variety of fundraisers.

Despite dealing with health anomalies not every kid has to face, he is an active teen, a skier and tennis player with a positive attitude and an inclination to help others. He is a role model and mentor for others learning to live with their diagnosis. And as high school graduation nears, he is making plans to study meteorology and engineering at college next year and is currently rebuilding his dream car, a Datsun 280ZX, in his free time.

What inspired you to volunteer with Elbowbumpkid?

We’ve always had a passion for helping out type 1 families in our community, because they’ve helped me out since before we started this. I ‘d been volunteering for Breakthrough T1D (formerly JDRF). I went to all their events, and we just decided it might be nice to run some of our own. I officially joined the board almost two years ago, but I’ve been helping out since it was founded.

Tell us about your volunteer role with Elbowbumpkid.

We put on everything from Bingo as a fundraiser all the way to an adventure course. The latter is like a ropes course. Kids can come out and have fun, and parents don’t have to worry about them because of the type one, because we have people out here who have it too. Parents can take a little break. We have a lot of stuff like that. I volunteer at those events.

I also run the Diaversary Card program. People submit the date they got diagnosed, and I send out cards to those who have their “diaversaries” each month. There are about 450 people all over the U.S. This month, we sent one up to Palmer, Alaska, which is just north of Anchorage.

What’s been the most rewarding part of your work?

Every once in a while, in our Facebook group, you’ll see posts of people excitedly opening the Diaversary cards and thanking us. That’s what I like to strive for. We don’t request that. It just comes up every once in a while, and it’s always nice to see.

What have you learned through your experiences as a volunteer?

The number of people who come to these events is a lot more than you would think. The last event we did, we met kids my age we didn’t even know existed who lived 10 minutes from me. Normally, through these events, you cross paths with people through things like the JDRF events.

One of the main appeals is meeting other people who have type 1 diabetes. I can speak from personal experience. For a good number of years, I was the only person in my school district who had T1D, and if I didn’t have those events, I would have assumed no one else has it. I was a kid and didn’t know. It’s nice for people to have a space where it’s like, “Hey, you have to deal with this disease too?”

Tell us about future partnerships, programs or events that you are excited about.

I’m looking forward to our event taking a bunch of people to see the Peter Pan musical at Bushnell Theater in Hartford. This is our first time doing it, and we have about 20 people going. It’s not a fundraiser event. This is just a fun event for everyone with type 1.

Why is it important for others to get involved with causes they care about?

It’s really nice to make a difference and to meet the people in your community. There are some friends that I’ve made that I don’t think I would have met had I not been volunteering.

Any advice for people who want to start volunteering?

Don’t be afraid to reach out. Most of the time these organizations need help. And if you say, “Hey, Elbowbumpkid, I would like to start volunteering,” chances are they aren’t going to say no. Chances are they’ll say, “Hey! That’s amazing. What are you interested in? What would you like to help out with?” There’s a solid chance that the organization that you want to help out with needs volunteers, because you don’t come across them often.

What do you want people to learn from your story?

Don’t let type 1 control your life. The trick is balance. You have to take care of yourself, but there’s no reason that it should prevent you from doing things, no matter how many oddities you have to overcome. Even with celiac, asthma, type 1 and a host of other things like food allergies, I’ve never let that stop me.

Do you want to make a difference in your community like Saige? Find local volunteer opportunities.