Kinnen was diagnosed with Glycogen Storage Disease Type 1a (GSD Type 1A) at just one year old. She spent her first birthday at Nationwide Children’s Hospital in Columbus, Ohio, recovering on the Genetics floor. Despite the challenges she faced, we were grateful for her presence and looked forward to bringing her home.
Twenty days before her first birthday, we rushed Kinnen to the ER due to persistent vomiting and breathing difficulties. In the PICU, it was discovered that she had a severe case of rhinovirus. However, we knew there was more to her condition.
Between the ages of 2 and 6 months, Kinnen experienced intense seizures following routine check-ups. She was always upset, excessively tired, and stopped growing at 6 months old. Despite visiting various doctors, her symptoms didn't align with her ultimate diagnosis, leading to missed answers. Nevertheless, we all persisted quietly while doing our best to live life as normally as possible.
Our time in the PICU turned out to be a blessing in disguise as it revealed the root cause of her symptoms. Kinnen was diagnosed with GSD1a, a rare genetic disorder that affects the liver. Her enlarged tummy was due to her liver storing glucose it couldn't process, leading to a lack of energy for her cells to function properly. We were overwhelmed by the love and care provided by the hospital staff and our support network, allowing us to gather the necessary tools for her recovery.
At the age of 4, another challenge arose when Kinnen was diagnosed with Autism. Although receiving a diagnosis can be emotionally challenging, we found solace in having the information and tools needed to help her move forward and heal.
Today, Kinnen primarily receives nutrition through a g-tube, and her glucose levels are closely monitored to prevent hypoglycemia. Despite the rollercoaster journey, we believe that adversity always carries a seed of equal or greater benefit for those who embrace it. This belief led us to start Heartwork.
We began framing and hanging Kinnen's paintings as heart-shaped pieces in our home. As others expressed interest in these unique creations, we realized we had something special.
Heartwork provides financial relief from medical debt and supports ongoing supplies, therapies, and services. Moreover, it serves as an avenue for Kinnen to learn about entrepreneurship. Her passion for drawing and painting comes as no surprise, given her family's artistic background. However, Kinnen is never pressured to create, and sometimes special requests may take months to fulfill, as we respect her creative process and appreciate everyone's patience.
While Kinnen's parents, Blake and Chelsea, occasionally provide guidance on color theory and composition, she is learning valuable skills through this process. Art therapy plays a significant role in her development, as she becomes immersed in her creative world.
People often have questions about Kinnen. Aside from her medical journey, she is a sweet child with unwavering love and loyalty towards her family, particularly her little brother, Wesley. She finds joy in nature and can entertain herself for hours with a simple feather. Adventure and exploration drive her, and she possesses an incredible memory and impersonation skills. Kinnen is a truly remarkable child.
Regarding her medical needs, Kinnen can eat, but she relies on a g-tube for multiple feedings throughout the day and night. Her formula, Nourish, is an organic whole food blend made in Ohio by Functional Formularies. This has been the best medicine for her, considering her food sensitivities. She enjoys pizza, her mom's homemade sourdough, chips (without seed oils), rice cakes, and Lily's chocolate in moderation to encourage oral eating.
Her glucose levels are checked 4-6 times a day through finger pricks, and maintaining levels above 70 is crucial. Without food or cornstarch every 2-4 hours, she can experience dangerously low blood sugar.
Cornstarch helps stabilize her glucose levels because it's a complex carbohydrate that the body digests slowly, maintaining normal blood sugar levels for an extended period. This prevents hypoglycemia.
Kinnen doesn't require any medications; instead, we supplement her diet with vitamins, real whole food, chiropractic care, and regular visits with her genetics team.
We are a family business consisting of Blake, Chelsea, Kinnen, and Wesley. Each one of us plays a significant role in every aspect of Heartwork. From moral support and laughter provided by Wesley to graphic and packaging design collaboration with Blake, or handling social media, heart cutting, and communication tasks by Chelsea, we all contribute to navigate this journey together.
Thank you for joining us on this remarkable ride!
-Chelsea, Blake, Kinnen & Wesley (and Luna the cat)
