Chelsea Kuhn described her newborn, Kinnen, as “the perfect baby.” Kinnen developing normally until about two months when she began experiencing severe seizures. That’s when Chelsea and her husband, Blake, knew something was wrong and brought Kinnen to Nationwide Children’s Hospital. Kinnen was diagnosed with the rare glycogen storage disease type 1A. Eventually, in order to support the Kuhns’ mounting medical bills, Chelsea founded The HeARTwork Centre. This interview has been edited for space and clarity.
Healthy New Albany Magazine: How did you discover Kinnen’s disorder?
Chelsea Kuhn: It was somewhere between six and 11 months that we ended up in genetics because I think everybody was just out of answers and figured, at this point, we need to do some genetic testing.
Photos courtesy of Elliott Lemberg
I was really impressed with the team. They started doing a little bit more on the counseling side to see how she was doing as opposed to running all of the lab panels because I guess those are extremely expensive.
We were in the hospital for 24 days … when she was diagnosed, and then we fought really hard to just get some really good food. She started growing at that point and healing very quickly and just completely turning around. She went into the hospital May 2017. We were there for her first birthday. Not hard to forget your kid’s first birthday when it’s in the hospital.
HNA: What solutions did you come up with for this genetic disorder?
CK: I didn’t know how the body processes glucose in your system. I have an art degree, so I didn’t think about these things. My husband (Blake Kuhn) is also a graphic designer. We actually really enjoy health and nutrition and that’s something very important to us, but I how your body actually processes these things were a very foreign concept to us. We worked really hard with their team in the genetics department. There are a couple fantastic geneticists there and a couple of dietitians. They’re the ones that designed the plan.
You and I could go without eating for a day, two or three, and our glucose levels would be fine. We would still be pulling energy from storage and you might not feel great, but we would be OK. In Kinnen’s case, the glucose doesn’t turn into glycogen and it just stays stored in her liver, creating a fatty liver.
A lot of what this came down to, as far as solutions go, was designing a very specific diet for her that keeps her blood glucose levels in a safe place.
The normal kid’s going to want to eat french fries and chicken tenders and pizza. And that’s not healthy for her body. So she is on a plant-based diet but she will be on that probably for another year or two and then (we’ll) introduce new foods to her. The one thing that she really wants to eat is pizza.
HNA: I understand that you’ve started this thing called The HeARTwork Centre. Can you tell me a little bit about that?
CK: I’ve always had an entrepreneurial side, so there came a point when Kinnen was old enough, she was about 2 years old, and I started introducing more paints and art supplies and things like that to her, just for sensory projects and to get her brain operating in a different way – she was also diagnosed with autism.
I started taking her paintings and cutting them up into little hearts. I just made one for her room because I thought it would look cute. … Then one particular friend reached out and said, “I saw what you did with Kinnen and that’s great.” I thought they were saying, like, “Great, crafts for kids,” but they actually wanted to buy them. What it turned into was HeARTwork.
People didn’t want to actually make them. They wanted to buy them from us. … For about three and a half years now, we have produced thousands of pieces of artwork and we just ask that people send the donation to her medical account. … All of it goes to pay off her debt and handle some medical supplies and appointments that are ongoing. I think we’re nearing (the sale of) about 2,500 pieces in the last two years.
HNA: Financial hardship too often follows medical hardship; can you tell us about that?
CK: When we walked out of the hospital, we walked out with the initial bill that was well over $300,000. Just for staying there for 24 days and then accruing.
There was an appointment or something every month. We fell into the pocket where we did not qualify for very much, if any, financial aid, because my husband has a good job and we do have a small business and I’m thankful for that.
The way that the system is set up … it looks at the amount of money you make and then says we don’t need that, but then it never looks at what you’re actually dealing with and trying to survive with, all of the bills that you’re accruing.
Eventually, what we’re looking at is potentially a liver transplant and I don’t imagine that’s not an expensive operation. … So it doesn’t really end, the financial part of it. Once we wrapped our head around it, we just knew that we needed another answer in this.
HNA: What does the future look like for the Kuhn family?
CK: I’ve always been taught that in every adversity there is an equal or greater speed of benefits for those who have a positive mental attitude, and my husband is very positive. He’s very future forecast and he keeps me in line when I start to get negative, but we’re always try to look at everything through that. We don’t know what the future holds. We have an idea of what the projection could be based on what has happened so far but medical advances are made all the time. There is research for her specific diagnoses that are absolutely amazing. I don’t know if it’ll come to fruition or not. I can’t hold on to that. But I can always be hopeful that the future is going to be better than what we have endured in the past.
Brandon Klein is the senior editor. Feedback welcome at bklein@cityscenemediagroup.com.
