My family and I attended the 19th Annual NFED Apple Classic Golf Tournament on June 6th. There was quite a turn out of golfers and the day was absolutely gorgeous! The temperature hovered around 75 degrees, so we were able to keep Mister outside for a good portion of the day. He did overheat a few times, and we had to take him into the air conditioning, but for the most part, he did well.
As Many of you may know, Mister and I are affected by the Hay Wells Syndrome of the Ectodermal Dysplasias. The ED’s are a group of approximately 150 heritable disorders that affect the ectoderm, the outer layer of tissue in a developing baby.
One of the ways that we are affected is that we are unable to sweat properly. I sweat a very little bit on the palms of my hands. Mister is unable to sweat at all, and therefore his body is unable to regulate his temperature when exposed to heat. Which is why he overheats when it is over 75 degrees outside.
We have to keep our thermostat at 72-73 degrees year round because of Mister’s thermoregulatory problems.
Last year, for the fifteen minute ride to church, we literally had to pack his carseat with ice packs (between the plastic and the fabric) on the way there and then carry a cooler with ice packs for the return trip home. We also kept a cooling blanket with us whenever we were not at home.
We are already having issues with him overheating this year. And it is more challenging this year, because is is more mobile. I can’t simply wrap him in the cooling blanket and expect him to stay there. He is constantly on the move, and constantly wants to be outside. So, we carry mister bottles, portable battery operated fans, the cooling blanket, etc, etc in a thermal bag with us everywhere.
The fact that the weather was so nice for the tournament was a real blessing!
Here are a few pictures from the tournament…
A fun time was had by all!
You have to see this motorcycle that was painted with the NFED colors and logo…
The owner of the bike has a daughter that is affected by Ectodermal Dysplasia.
One of the ways that the NFED accomplishes it’s goals is through parnterships like the one with the Vaseline Skin Fund. The goal of Vaseline Skin Fund is to improve the lives of those affected by skin conditions by providing them with better access to the specialist knowledge, advice and support they need. The NFED has partnered with the Vaseline brand began in 2006. Since then, Vaseline has contributed $25,000 to help support two National Family Conferences and a Professional Symposium for Dermatologists at the University of Iowa. Vaseline also produced and donated a promotional video for NFED. Watch Video
Learn more about the Vaseline Skin Fund,
We are grateful to Vaseline for their generous support.
*information copied from the NFED website at https://nfed.org/news_latest.asp