Today is our second #RareDiseaseDay as parents of this absolute firecracker of a kid.
I’ve shared his story before, if you missed it you can catch up HERE. Today Ben is completely healthy but we had a hard time imagining this kind of future when he was born as 1 in 500,000 with a giant congenital melanocytic nevus.
When he was born no one at the hospital really knew what to do. They wrote the “Giant Congenital Nevus” on a scrap of paper and told us to google it. We got lucky, Ben doesn’t have further physical complications that can come along with a giant nevus. He does have a slightly higher risk of developing melanoma so we take extra steps to avoid too much sun. And someday we know we will deal with the mental part that comes with not looking like everyone else.
As a rare disease, funding for research and support is sparse. But Nevus Outreach Inc was a group we found early on and their knowledge and support have been invaluable to our family. Every other year they hold a conference for those with a nevus and their loved ones to gather and learn and mostly just be around people who really get it. We won’t be able to attend this year, but I would really love to raise enough funds here to cover the cost of someone else to go. Will you consider making a donation?