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The National Foundation for Ectodermal Dysplasia Family Conference:
My mom joined me in St. Louis for a few days for the NFED family conference. As most of you know, my boys both have a genetic condition called Hypohidrotic Ectodermal Dysplasia. Although they still haven't been officially diagnosed (still on that waiting list for a geneticist) we are certain that they are affected. The condition primarily affects sweat glands, hair and teeth. Neither of my boys have any teeth or functioning sweat glands that we know of.
The family conference is a pretty spectacular event that has been going on for thirty years. It is a place where all of the kids get together, take out there dentures, and have a good time with kids that look just like them. The parents get to spend two and a half days in classes to learn about the ectodermal dysplasias, and network with other parents about what has worked for them. The people here are a wealth of information. I found a woman that makes custom cooling vests for the kids to stay cool in the hot weather. I spoke with several moms that are in my same position, about to embark on the denture journey, and several other moms that have just been through it and gave great advice on what works. They gave a seminar on how to get dentures covered by insurance. There was a panel with young adults that have ED, where they answered any question about dentures, implants, or anything else related to growing up with ED. I bought a couple of books about ED; one book is Lionel Learns What Matters Most, which is a book about a lion that doesn't have a pretty mane like the rest of the lions, but discovers that what's on the inside matters most; and Carver's New Smile, which is a photo book that chronicles a boy going to the dentist to get fitted for dentures. We have been reading these books since I got home, and the other day Sawyer said "I want to get my new teeth like Carver, wanna go to the dentist." Priceless!!
I feel lucky to have found a network of such amazing individuals. The members that run the NFED work tirelessly to get funding for research and aid, to help those families that are affected. I have called in to the office before with questions about teeth, and the director spend 45 minutes with me answering all of my questions. It would be a much more daunting path for us if it was not for the wealth of information that the foundation, and network of families provides. Because this is such a rare condition, the NFED funds much of the research that is done for the ectodermal dysplasias. Because of this research, there is currently a drug in clinical trials that, if given shortly after birth, will eliminate all of the symptoms of HED. This is an amazing prospect! Here is the link to the NFED, if anyone wants to buy a book or has the means to donate... http://www.nfed.org/. We were welcomed with open arms, and I know that this is going to be a place of refuge for my boys in the years to come.
This is adorable, three-year old Cooper, with his new pearly whites. He was so kind to let me photograph his new trick so that Sawyer can see how cool Cooper is:)
This is the finale, where all of the kids did a little performance and sang a song. I can't wait until my boys can come and be a part of this clan. Actually, I could have found a few boys to take home with me. There were so many kids that looked like Sawyer and Grayson it was unreal. We were sad that the boys weren't with us, but we didn't have to look far to be reminded of them.
On our way to the airport, we made a stop at the Cathedral Basilica of St. Louis, because I had read some amazing things about it. They were having a mass at the time, so I couldn't really take photos indoors, but what we saw was amazingly beautiful and serene.
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We ended up having some unexpected free time this morning, so because it is such a historic place in St. Louis, we went on a tour of the Anheuser Busch brewery. It was super fascinating.
There was a talent show this night at the conference, and this little guy didn't need a stage to show us all of his tricks. I don't know if spunk is a characteristic of ED, but watching this guy was like watching my charismatic little Sawyer.
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We spent our first morning seeing some sights around St. Louis.
The view from the top of the arch.
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2 comments:
It honestly warms my heart that you were able to tap into that group of parents and professionals who know so much about the condition. I'm glad you were able to go! It's so neat to be able to find a group who completely understands. I hope the denture process goes smoothly for you! You're such good parents and those boys of yours are so cute. :)
Marci, I am so glad you were able to go to that conference and learn about HED and more importantly met other kids and families that are as personally affected by it as you guys are. So awesome that you are now connected to a new kind of family. Loved the picture of all the sweet kids at the conference. And we miss those boys of yours!!!
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