Killians Medical Expenses

Dear family, friends and to anyone this message reaches

On October 28, 2023 Katelynn and I were blessed with our baby boy Killian Cote DeFrances. Becoming a parent is truly the most amazing gift in this world. It's the moment you instantly stop caring about yourself and want nothing less than everything for a tiny human you just met. Killian was born perfect with no signs of concern. This however changed very quickly. I noticed in the nursery that Killian was missing skin on his fingers and his shoulder. This at first was not alarming. It wasn't until a small sticker was removed from his belly which lead to his skin pealing off that we knew something was wrong. This was the moment that as a nurse you know this cant be normal but your heart fights your knowledge and experience and tells you everything is ok. Katelynn and I held Killian one time before the Doctors told us he needed special care and was placed into a helicopter and flown to the nearest Children's Hospital. Killian wasn't eating and began getting blisters with even the most gentle care. Seeing your newborn child with IVs, wounds and being sent for testing is nothing you can prepare yourself for. Killian was diagnosed with Severe Junctional Epidermolysis Bullosa. The Doctors told us he presented the best they had ever seen for his condition. This gave Katelynn and I hope that just maybe his skin wouldn't continue to get worse. We were able to bring him home after staying in the NICU. No matter what we did his skin got worse. Within a couple weeks he was missing 30-40% of his skin and had sores and blisters in his mouth. This didn't stop him from attacking his bottle when it was time to eat and he loved to be held even when it had to be so painful. As strong as he is there was nothing we could do to stop him from getting infections. A few weeks after being home Killian was admitted a second time the hospital with fevers and infections. His skin was now getting worse literally by the minute. He needed multiple IVs, antibiotics and even a lumbar puncture. The Doctors had a meeting with Katelynn and I to explain Killians situation. His condition has no cure and his life expectancy only had a 20% chance to live past the age of 5 months. We decided to bring Killian home on experimental medications and show him as much love as we can while making him as comfortable as possible. Junctional Epidermolysis Bullosa comes with a large cost. Its mentally, physically, emotionally and financially draining. Killian is wrapped in bandages covering his entire body except is face and hands at times. He is unable to go to daycare so it requires full-time care from Katelynn and I. We honestly are blessed to get this much time with our newborn but not being able to work comes at a cost as well.

In short if family and friends are reading this we want to apologize for being absent in many of your lives. Many of you have reached out or asked why you haven't heard or seen pictures of our newborn baby. This has been an extremely hard time for us and asking for donations when we know so many of you are also struggling is not an easy thing for us to do. Please help by donating to Killian for current and future expenses. Any amount is greatly appreciated. If you are unable to donate financially please say a prayer for our baby boy that his experimental medications will help give him comfort by healing his skin.

For more information on EB and other ways to help different families struggling with this disease please refer to DEBRA. They have been extremely helpful to our family. https://www.debra.org/about-eb/personal-stories

Thank you from the bottom of our hearts.

Katelynn, Timothy and Killian