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Caleb’s Story

Hope Rooted / Stories of Hope / Caleb’s Story

Meet Caleb, a recent Hope Rooted grant recipient!

Meet Caleb - grant recipientCaleb, our miracle baby, was born on October 28, 2013 via emergency C-section after they detected a heart rate of nearly 300. He spent 11 days in the NICU and we left with a diagnosis of Wolff-Parkinson-White, a heart condition that causes someone to go into tachycardia with no warning. A dangerous condition in the early years if it goes undetected, however managed quite well with medication or until ablated.

Caleb never crawled, waved, blew kisses, jumped, climbed stairs but these concerns were always dismissed whenever brought up. He finally started walking at 18 months, but his gait was atypical, and he fell often.

These concerns grew stronger and forced me (mom) to take a medical leave from work in the summer of 2016. By Christmas we had an additional diagnosis of Mild Cerebral Palsy (CP). But we also had a referral to Genetics because something wasn’t adding up to his physicians, however that was somewhat dismissed as we felt we now had a diagnosis of CP.

In March of 2018, Caleb needed some blood work done for his heart, so we decided to also have the blood work done for Genetics. The results of this test were completely unexpected, Duchenne Muscular Dystrophy (DMD). This is a rare and fatal genetic disease. Itis the worst type of Muscular Dystrophy that typically takes the mobility of boys in their early adolescent years and takes their lives in their late teens. This is a disease that causes the muscles to weaken over time as they do not have the muscle protein to allow them to grow like typical humans have. It is a genetic disease that typically only affects boys as it is found on Chromosome X, of which boys only have one. Women can be a carrier of this disease, but not show signs as they have a back-up Chromosome X that steps into help. Two months later, we found out Caleb’s younger brother, Duncan, also has this fatal disease.

We know our boys have a terrible disease that unless something changes fast, will take their lives much too early. It is said they will be wheelchair bound by 10-12 and lose their lives in their teens, maybe early 20’s if we are lucky. Because their disease is genetic, they can’t get better. I believe we can get their bodies as healthy as possible so their systems can focus specifically on Duchenne. The disease is bad, the outcome is even worse, but let’s celebrate with healthy bodies while they are here with us. Unfortunately, functional medicine testing and treatment approaches to healthcare cost money. Historically, we have hit our out of pocket max soon after the insurance period starts, but that still means we pay out of pocket for any non-traditional services we obtain. We hope that by incorporating treatments and approaches that functional medicine offers that our children will learn about how to best support their bodies. I will do anything for my boys to keep them alive just a day longer and Hope Rooted is helping our family to do that.

– Sarah Kasner, Caleb’s Mother