Support Colton's Journey to Health and Hope

Our youngest son, nine-year-old Colton, was sent home from school with a typical stomach virus. Three days of vomiting were then followed by a mild fever. His fever started to rise and just wouldn’t go away. After multiple doctor visits, telehealth, and ER visits within a two-week period, Colton was admitted to Duke Children's Hospital. Our doctors were mentioning the possibility of an odd-sounding disease while noting that Colton did have the Rhinovirus as well. It was later confirmed Colton has Kawasaki disease.

Kawasaki disease (KD), also known as Kawasaki syndrome, is a disease that can cause damage to the heart and blood vessels. It typically impacts children under five years of age and can be treated with immunoglobulin where most kids can recover. KD can cause serious complications, however, including swelling of parts of the heart and other blood vessels. When this happens, the heart doesn't work as well to pump blood to the body and could burst (coronary artery dilation and aneurysms).

Unfortunately, Colton’s levels went up and down after the first round of treatments, and yet, we, and the doctors, were hopeful. We were in the process of being discharged, literally bags packed, when they said Colton was in the 10-20% of kids where the initial immunoglobulin treatment didn’t work. They found 9.5 out of 10 and 8 out of 10 sized aneurysms in his coronary arteries along with multiple moderate-sized ones as well. Shock and fear don’t begin to describe what we felt that day and every day since, but we have no choice but to take deep breaths and move forward. As hard as this journey is, doctors noted that Colton arrived on the 10th or 11th day of developing Kawasaki disease, and if it had been any later, we would have had a far worse situation. So, we are awaiting our new care plan as Colton is now on Heparin and other blood thinners, plus a multitude of steroids and other medications to help his body stay stable and strong.

Our son is going to need life-long care, doctor visits, medications, and treatments. Jim, Colton’s dad, is working at a wonderful small business with benefits; however, the deductibles, co-pays, out-of-pocket maximums, and immediate prescription needs are beyond our reach right now. I’m unable to work currently as I’m staying with my son at the hospital. I’m here giving Colton all the love I can and keeping him calm, weighing medical care decisions, and dreaming of those typical days, where I’ll send my three boys to school without a worry.

We are staying positive for Colton and are truly grateful for the kindness that pours from every person at this hospital. They have counselors that contacted Colton’s teacher to learn about him and gave him fun math problems to figure out. Colton has been fighting his sadness by coming up with ways to help other kids deal with the pain and worries of wearing multiple IVs, as well as what drinks to have when you feel too sick to eat. He’s amazing. We will be forever grateful to Duke Children’s Hospital and to WakeMed Pediatrics for providing the care Colton needs.

With heavy hearts and fierce determination, we would truly appreciate any assistance you can provide. Thank you all. Sending love from our family to yours.

Beth and Jim