I Want to Keep My HED

October 9, 2014July 25, 2019 Category: Stories of Hope Posted by NFED

By Lindsey James

I became a mother on April 22, 2008. I had spent nine months preparing myself for the most important responsibility I would ever have. I was a sponge, absorbing all the information about pregnancy and motherhood I possibly could.

My pregnancy was pretty uneventful and my labor experience was a dream. Everything went exactly as the books said it would. The moment Keegan’s eyes met mine, I knew he was an incredible blessing but I had no idea just how much he was going to change my life.

The first 18 months of Keegan’s life were filled with lots of doctor visits, respiratory illness, numerous hospitalizations and many unanswered questions. I quickly discovered that those books I had spent so much time reading didn’t really apply to my baby. There wasn’t any advice about removing enormous green nasal crusts, or dealing with unexplained fevers. The suction bulb became our best friend, and I learned the best way to calm my fussy babe was to undress him.

For a baby, Keegan was great at communicating his needs and through lots of trial and error, I eventually got better at understanding him. Ultimately, an internet search led me to the NFED website and Keegan’s official diagnosis of x-linked hypohidrotic ectodermal dysplasia. I had finally uncovered the missing piece of the puzzle and I was relieved.

We’ve come a long way since then and Keegan is now a healthy and thriving six-year old. His biggest challenges are heat intolerance and skin irritations. He only has two natural teeth and has been wearing an upper denture since 2011. Like most things, he handled the fitting process like a champ and adjusted very quickly to wearing his denture every day. He is looking forward to being fitted for a lower denture sometime within the next year.

He is in first grade and we are very blessed to live in school district that goes above and beyond to accommodate his needs. Prior to Keegan starting Kindergarten, I had met with the elementary principal to make him aware of Keegan’s condition and express my concern about no air conditioning in the school. I went to the meeting fully “armed” and prepared with info from the NFED as well as a letter from Keegan’s pediatrician stating that he needs A/C, etc.

I was pleasantly surprised that the principal already had a plan. He was more than excited for Keegan to start school and was committed to proving him with the environment he needed to be successful. Window air conditioners were installed in both Kindergarten classrooms. This year, the units followed Keegan to the first grade classrooms. A portable A/C unit is available for Keegan to use during music class if needed.

The school has also provided an insulated “emergency” bag that contains cold water, a Frogg Togg cooling towel and ice packs. The bag is used for field trips, and also on days Keegan gets too warm during recess or gym class. I worked with the school nurse to establish an “emergency plan” for Keegan and was thrilled when I learned that an upper grade teacher who doesn’t even have Keegan for a student yet was familiar with the plan.

When it comes to friends, Keegan seems to make them easily. He has had a few issues with other kids teasing him, but not necessarily because of his HED. Last year, an older boy was teasing him for having “yellow” teeth. It definitely bothered Keegan to be picked on, but he recognized the ridiculousness as the teeth of his denture are beautifully white. Keegan chose to ignore the boy and eventually the teasing stopped completely. More than likely, the older boy didn’t even know Keegan wears a denture and was just being a bully.

I‘m well aware that teasing will undoubtedly be a challenge we are faced with more and more as Keegan gets older. My hope is that he will keep his positive attitude and continue to handle these types of situations sensibly.

It has always been important to me that Keegan understand his condition and embrace his differences. He knows his limits and doesn’t over-extend himself, but rather than giving up, he has learned many ways to adapt and keep himself comfortable. He is a brilliant little man in both wisdom and personality. He is proud of who he is and likes that he’s unique. It warms my heart when I catch him making his own HED awareness videos with his Leap Pad and stuffed animals (all of which are also affected by HED).

A while ago, I had shared with him the exciting news about the EDI200 clinical trials. A small part of me worried that he might be disappointed that the trial was only for newborns. His response was quite the opposite – “But I WANT to keep my HED!” he exclaimed, concerned that someone was going to try to change him. My heart overflowed with pride.

Granted, dealing with ectodermal dysplasia isn’t always as easy as Keegan makes it seem and can be absolutely be overwhelming and frustrating, but thanks to the NFED, we are not alone – we have each other. I take great comfort in that and I look forward to what the future holds for my little man. No matter what “speed bumps” HED may create throughout his journey, he will persevere. After all, ectodermal dysplasia may come with a variety of limitations but it also comes with an incredible, persevering spirit.

Share Your Story[/button]