• Skip to primary navigation
  • Skip to main content
  • Skip to primary sidebar
  • Skip to footer
Dairy Carrie
  • HOME
  • BLOG
    • Humans of Agriculture
    • Learn More About Farming
    • All About Dairy Products
    • Everything else
      • My Life
      • Gift Guides
      • #NonDairyCarrie (Guest Blogs)
  • My Recipes
  • About Me
  • Speaking/Partnerships

Our second #RareDiseaseDay as Ben’s parents.

February 29, 2020 2 Comments

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?

Filed Under: My Life Tagged With: Ben, nevus

Subscribe

for your weekly recipe fix.

Previous Post: « What happens to a dairy cow’s calf after it is born?
Next Post: I never wanted to be a Wife. »

Reader Interactions

Comments

  1. Dawn Panda

    February 29, 2020 at 10:13 pm

    What a beautiful little boy you have. With those big gorgeous eyes, I foresee you having a ladykiller in your future! I’m so glad he doesn’t have further complications.

    Reply
    • dairycarrie

      February 29, 2020 at 10:14 pm

      Thank you! He is adorable and also very sassy!

      Reply

Leave a Reply Cancel reply

Your email address will not be published. Required fields are marked *

Recipe Rating




Primary Sidebar

Oh, hi!

You know those people who wear foam cheese wedges on their head? I’m one of them. Cheesehead-hat-hair is the bane of my existence. I am a proud Wisconsin dairy farmer, a mom and a wife. I say things I shouldn’t say entirely too often. Good cheese and beer are my love language. When I die I hope to have pre-written one of those funny obituaries that goes viral. If you want to know more ->

Like Podcasts?

Join the dairy girl network

Donate Dairy to second harvest food bank

Follow Me

  • Facebook
  • Instagram
  • Pinterest
  • Twitter
  • YouTube

Footer

Follow Me

  • Facebook
  • Instagram
  • Pinterest
  • Twitter
  • YouTube

Privacy Policy

Copyright © 2023 Dairy Carrie on the Foodie Pro Theme