my story
By Brandon Klein
Editor’s Note: “My Story” is a first-person column OR a Q&A feature of a New Albany community member that centers on health. Have a story to share? Email bklein@cityscenemediagroup.com. Submissions should be no more than 1,000 words.
Glucose and Art Family gets creative with child’s rare genetic disorder Chelsea Kuhn described her newborn, Kinnen, as “the perfect baby.” Kinnen developed 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.
and took her to Children’s … for 10 days in the ICU. The team there was so good. We were blown away by their response to everything, but she was really sick and it was during that time that they realized they were just going to go ahead and run every test. That was when she was diagnosed with glycogen storage disease type 1A. Apparently this a rare disorder and there are multiple types of it. 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 how your body actually pro8
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Photos courtesy of Elliott Lemberg
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. 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. I remember one night just holding her and she started throwing up and (I called) the ambulance and they came in
