James's Nevus Removal

Hi! My name is Kaitlyn, and my husband and I are raising money for our son, James. Those that know us know that we aren't the ones to ask for help. We have always figured things out and held the hope that our hard work would be enough. We have also been blessed with an incredible family who have come through in times of need and supported us every step of the way. As James's medical bills start to roll in from his multiple previous procedures, and knowing there is more to come, the weight is beginning to feel heavy. But with James's rare condition, we will do everything we can to ensure his health and happiness, no matter what we have to do. We still believe that everything will work out!

James's story:

James was born with a skin condition called a Giant Congenital Melanocytic Nevus, which is a scary term for a big mole on his back. Through testing and procedures, we are learning a lot about a rare condition that can end up scary if not treated and monitored.

James had two separate MRIs done at just over two months and three months old. Fortunately, both showed that there was no internal growth, so we could breathe a sigh of relief! After meeting with a pediatric dermatologist, as well as a plastic surgeon, we decided to move forward with a surgical plan to have it removed in its entirety. With the increased risk of developing melanoma, this was a no-brainer.

At five and a half months, James had his first surgery. They removed the first large mass up by his neck that would give him more mobility and the chance to lay his head down flat while on his back, something that was not possible before surgery. Side bar: since about 8 weeks old, James has slept on his side out of comfort. He recovered beautifully from this first procedure, so we moved forward with the next surgery just a few months later.

Because he was a little older and the previous surgery went so well, they were able to be a bit more aggressive with their approach this time and remove a MASSIVE amount. He did wonderfully with his pain management and was up and about in his walker the next day! What a trooper!

After this second surgery, we had to change our insurance plan, and his doctor was no longer covered. We felt defeated. So few doctors in Florida seem to even know about this condition, let alone treat it. I joined a support group on Facebook for people with the same condition or parents of children with the same condition and turned to them for some guidance. Several people were using a world-renowned specialist in Chicago, and to our surprise, he took our insurance!

James had another surgery in September, one month after his first birthday. This time it would be to begin tissue expansion to help replace the nevus with fresh and healthy skin. Two expanders were placed just under the skin, and it's been our job over the past 11 weeks to fill those expanders with saline through the ports also just under the skin. This has been a scary process and so stressful in many ways, but we couldn't be more grateful for the support of our friends, family, the doctor, and his team. We have also been very fortunate to work with the team at Ronald McDonald House in Chicago. They have made it possible for us to stay with them as we go through this out of state, and be able to focus on the care of our son.

In just under two weeks, we will be making the journey back to Chicago to have the expanders removed, parts of the nevus removed, and the healthy skin put in its place. Just in time for Christmas!

Thank you for taking the time to read about our James, and we appreciate any help more than you know.

You can see a lot of his journey through my TikTok James's Mama