Courage For Coltyn

After 3 hours of surgery and 2 hours sleeping he is finally awake and loving his new smile! Next step is his full dentures! Thanks for all the love, support, and prayers! ❤

A little pre surgery fun! This new children's hospital is absolutely beautiful! ❤

We've made it safe to Charleston! Tomorrow is the big day! Say a prayer for Coltyn!!! ❤

Some updated photos of my boy! ❤

Best friends/God brothers ❤ 🙏

Someone is also in kindergarten this year! ❤

Coltyn was Catboy for Halloween 🎃

Hello all 🖐 We hope everyone is doing well during this Covid-19 pandemic! Its been a while since I've posted some updates about Coltyn! I do apologize for that as we've had some major personal changes in our lives, but we are doing okay and back on track! The biggest update is that we are heading back to Charleston tomorrow for Coltyn's surgery we've been waiting YEARS for!!! The denture process has FINALLY begun for us! I will definitely try to keep everyone posted!

Check out this article on Coltyn's friend Nora!

First In Our Family | National Foundation for Ectodermal Dysplasias Ashley Braden's daughter, Nora, was the first in her family to be diagnosed with hypohidrotic ectodermal dysplasia. Read more to find out how they are coping and why she'll be at the dentist so much.

Happy Halloween!! Coltyn wanted to be a doctor this year!!!

We are in touch with families in 91 countries. Tell us what country you live in.

Happy National Teddy Bear Day!!!!

My name is Coltyn Cash, born June 20th 2015 at 2:09pm and weighing at 7 pounds 4 oz, 21 inches long! I was born with a rare genetic disorder called Hypohidrotic Ectodermal Dysplasia with immunodeficiency! I can't sweat, so Mommy has to worry about me overheating, so I have a cooling vest, liner for my stroller, and a cooling towel handy just in case, my hair is white and brittle, my teeth will be a little different, but with help from my dentist and Maxilliofacial doctors I will have a nice pair of dentures around 5 years old! I have real dry skin called Eczema so I have to use special lotions, shampoos, oils, and body wash. I have already had one surgery and one coming up. I will probably have surgery at least 5 times before the age of 5. I'm just a awesome kid and ED doesn't slow me down!!

Happy National Read A Book Day! Our favorite book is "Lionel learns what matters most". It's a book about my son's rare genetic disorder Ectodermal Dysplasia! What is your favorite book?

September 5th we celebrate National Cheese Pizza Day!!!!

Courage For Coltyn updated their business hours.

Does anyone want to buy a coupon book for Coltyn's school fundraiser? It's $20 per book and has over 100 different places and you can save $4,914 in actual savings!!! Let me know! You can pay with a check or online with EZPay!

*Update Of Coltyn*
Sorry I haven't updated in a while on everything, sometimes life gets the best of us, and other priorities. Here are the latest updates and details on my sweet guy!

• Pediatrician •
Coltyn went for a four year check up, and my baby had to get his shots for school 😥 His vitals were great! No concerns from Dr. Webb. We go back in a year unless he gets sick!

• OT/ST •
Coltyn is exceeding expectations in occupational and speech therapy! He has achieved all his goals and just recently got reevaluated. He is still a little behind than other children his age so he will continue therapy. His speech and overall focus has improved. 👏

• Dentist/Maxillofacial •
We are in the process of shaping his teeth and getting his first set of dentures! He goes back to Dr. Green September 24th! He will have to be put to sleep for this procedure! We will know more once we talk to her in September!

• Opthalmologist •
We see Dr. Varn in a couple weeks!! Hopefully Coltyn won't have to get glasses quite yet! I will update as soon as we see her!

• Immunology •
We went to MUSC for our annual checkup. Dr. Williams is concerned about Coltyn starting 4K. She said if he gets sick and ends up needing two rounds of antibiotics then he will need to come back before February. If that happens he is possibly looking at immune shots 😔 so please pray he stays well and doesn't get sick!

• Dermatology •
We meet our new dermatologist Dr. Winelee! She was so sweet and observed Coltyn thoroughly! Her entire team loved seeing Coltyn and introducing themselves. She did changed Coltyn's topical prescription to a more moderate acting ointment. Hopefully that improves some of Coltyn's rough patches on his body.

My baby starts 4K August 19th 😔 I'm so nervous and happy for him. I know I will cry! Luckily he has a great IEP, and 504 plan to help his educational needs. His teachers are Mrs. Develan and Miss Dame! I'm sure he will have a wonderful time meeting new children and learning new things! I will try to keep everyone updated throughout the months! ❤❤ Thanks for the love and support!

My baby!! ❤❤

Did you know this fact?

How is my little guy already starting 4K!! 😭❤️

Guess who starts school this year?? ❤

Getting a bill made into law takes a LOT of time and work. Learn why we're at a critical stage for the Act. We have 6 reasons why every NFED family in the USA must take action right now at https://www.nfed.org/blog/elsas-clock-is-ticking/

More great news!!!

EXCITING NEWS! EspeRare and Dermelix Biotherapeutics announced today they are re-launching the research study to develop DMX-101 as an in utero protein replacement therapy to treat x-linked hypohidrotic ectodermal dysplasia (XLHED)! The purpose is to confirm the findings from a pilot study in which babies received a prenatal treatment and developed working sweat glands and an increased number of teeth! The NFED began this research in the 1980s and have nurtured it to this point. If approved, it could be the first treatment of its kind - ever.

https://www.nfed.org/blog/two-partners-re-launch-xlhed-research-study/