Kacy Daniel was born on the 9th of June 2016, with a very rare skin condition called Congenital Melanocytic Nevus. He has a Giant Arm Nevus on his left arm and “satellites” all over his body. The satellites range in all sizes and colors, some are raised and some of flat. As little as 1 in 500,000 are born with this condition, to this degree. This puts Kacy at an increased risk of developing melanoma, as well as having additional issues and complications with his skin. Not to mention the social issues he will be faced with, which as a parent is unbearable to even think about.
Being so rare, there is very little information and awareness about CMN. Kacy was born to a room full of people with no answers. It was the scariest moment of our lives.
We all go through life trying to find our purpose. Being parents to Kacy is our purpose. This was and is the most shocking, painful, stressful, eye opening, humbling, special and beautiful thing we have ever experienced. We have never felt feelings so deep, fear so overwhelming and hope so strong.
As parents we are being faced with the most difficult decisions we will ever have to make. We have to do what we feel is best for his physical and mental health. We have met with 3 pediatric dermatologists and 4 surgeons and have many more appointments to come. We are exhausting our options and are doing everything in our power to make the right decisions.
With all of that said, we are trying to raise funds for Kacy and his ongoing medical costs. At this point, though we cannot remove everything, we have chosen to do some. Starting with both cheeks, part of his forehead, one behind his ear and one on his right hand. He will then have to go back for a second surgery to finish his face and from there we will continue to explore more possibilities and decide if we will go further.
A few of the doctors we met with do not accept insurance and unfortunately they are the ones that we felt the most comfortable with and trust the most. We have his first surgery scheduled for early December. The funds will go toward the surgeries, the anesthesiologists, the medical facilities, medicine, follow up appointment fees etc.
This is extremely difficult for us to do and we want to thank you in advance for your support and let you know that we do not expect anything. If this doesn't work out we will be ok, we will find a way. Even just sharing and forwarding this on to others to spread the word would be a gift and appreciated just as much as a donation!
We want to raise as much awareness as possible, so other families don't have to go through what we went through. And so others learn to recognize the condition when they see it on the street.
This beautiful baby has already brought us so much joy in his short 2 months of life. He is truly special. He is one of a kind, inside and out. We want to give him the opportunity to live as normal of a life as possible. And so begins our journey to better his life and help others in the future!
Thank you so much for reading our story. Love to all!
Steph, Danny, Desi and Kacy <3