Posts May Contain Affiliate Links. See Disclosure. All opinions my own.

Shamrocks and Shenanigans

In honor of International Rare Disease Day, a day designed to bring awareness to the many rare diseases which are low in prevalence by high in complexity, I want to encourage you to check out the NFED webpage and the NFED Facebook Page.

For those of you who don’t know, my son and I are both affected by Hay Wells Syndrome, which is one of the ectodermal dysplasias.  The NFED is dedicated to bringing help and hope to families affected by ectodermal dysplasias worldwide.  I’ve been fortunate enough to grow up with them practically in my backyard.  I also now serve as a Family to Family Support Liaison for them, a role I started this year.

boy affected by hay wells syndrome

hay wells syndrome

Just this last week, I received an email from a new Mom, through my website, whose ten day old baby was just diagnosed with Hay Wells Syndrome.  I was able to offer her encouragement and hope, and point her toward the NFED.  It’s emails like that one that prompts me to talk about ectodermal dysplasias here and how they affect our lives.

For me, Hay Wells Syndrome means that I have no hair, only two natural teeth, no eyelashes or eyebrows, sensitive skin, and am unable to sweat properly.  I also am prone to sinus infections, since I have no cilia in my sinuses, and have conductive hearing loss.

For Mister, Hay Wells Syndrome means that his hair is abnormally textured and missing in some places, he has fewer than typical permanent teeth on xray, has no eyelashes or eyebrows, is prone to skin erosions, and unable to sweat.  Temperature control is our biggest concern with him.  He’s had quite a few surgeries on abnormally formed tear ducts and has to keep ear tubes in place to prevent further hearing loss and infection.

Our family is proud to help with awareness and fundraising projects whenever we can.

To that end, I want to tell you about a neat opportunity to help raise funds for the NFED.  It’s called Shamrocks and Shenanigans, and it begins tomorrow, March 1st and runs through March 17th.  It is our March fundraising effort, and Mister could win a Kindle Fire if he raises $3000.

Shamrocks and Shenanigans Prizes

You can help him by making a donation to the NFED and writing “in honor of Zane Higgins” in the “What prompted you to donate to the NFED” box.

Even if he doesn’t win a really cool prize, it would mean the world to him (and me) if you helped us raise funds and awareness!

Posts may contain affiliate links. See Disclosure. All Opinions are My Own
About Virginia

Hi there! My name is Virginia, and I am the author/owner of That Bald Chick. I am a Christian, wife, mother of three, full time homemaker, homeschooler, and ministry volunteer in addition to being a blogger. In my free time *cough* I enjoy reading, writing, taking walks with my family, and listening to music.

Comments

  1. That is awesome that NFED had a website that is able to provide resources to others and your son wins that Kindle fire. I am sure he would be super happy if he did.

  2. I would be super happy if he won too! I had never heard of Hay Wells disease and think it is awesome that you are raising awareness for a worthy cause.

  3. I applaud you for this! You seem so brave..

  4. WOW! I didn’t even know this existed! Thank you sharing this! I know it makes people feel like they are not alone. Without people are you and your son no one would know anything about this rare diseases. Thank again for sharing your story

  5. so neat that you were able to help a new mama out like that and give her hope and information. Hoping your little boy wins that Kindle!!!

  6. That’s great, I spread the word about the fundraiser/contest! I think one of the very powerful things to come out of the Interne is the fact that people with rare conditions can access support and information that was never available before. It’s so powerful and I know that new mom must have been so glad to find this site.

  7. Thank you for sharing and for being a calm voice of experience to people new to the diagnosis. You are awesome!

  8. Thanks for posting all of this information, I have never heard of this condition before. I think it’s great that you offer the support that you do. I will share this.

  9. I am so glad you are posting this information! I never imagined!

  10. I was unaware of Hay Wells Syndrome, thank you so much for sharing your story and for helping others! I will definitely share this post.

  11. Thank you for sharing your and your son’s story, I had no idea it existed either! I donated and will share the post!

  12. I love how supportive your family is of each other, that’s great! Awareness is where’s it’s at. I’d never heard of this syndrome before meeting you. Good luck to your son!

  13. Sue Hull says:

    You’re both so brave and courageous.God Bless you both. I’ve never heard of this and I will share this on FB,Twitter,Pinterest,G+.
    Hair is so overated anyway. I had to shave my head in 2011 because chemo made it start falling out so I just shaved it. I’m now cancer free. I give God all the praise & glory that I am. I’ll keep you both in my prayers. I’m so glad I found your blog. I know you’ll reach your goal of $3,000. Your son’s lego building is very cool. I’ve loved legos since I was a kid. Have a good day! 🙂

  14. Thank you for sharing your son’s story.