When my sister, Denyse, and I were younger, we had smiley face tee shirts that said “We Can’t Smile Without You.” At the time, it was the slogan for the National Foundation for Ectodermal Dysplasia (NFED) which is an organization near and dear to our heart. Denyse and I are both affected by Hay Wells Syndrome, which is one of the Ectodermal Dyplasias. Saying Ectodermal Dysplasia is kind of like saying soup. There are quite a few varieties. The syndrome we are affected by affects hair, skin, teeth, nails, and sweat glands, among other things. Denyse started wearing dentures at the ripe old age of 6 or 7, and I got my first set of chompers by the time I was 8. Smiling is a big deal for us. Denyse later received mandibular dental implants, at age 16, through the National Institutes of Health, through a research program designed to see how dental implants are tolerated by patients affected by Ectodermal Dysplasia. That was 20 years ago. (shhh… don’t tell anyone I just told you how old she is)
Here’s Sis and I together…
When we were growing up, we never imagined that one day the slogan “We Can’t Smile Without You” would become so personal! Meet Dyllan, Danielle, and Delores.
Dyllan, Danielle, and Delores are Denyse’s kids. All three are affected by the same syndrome that Denyse and I are affected by. All three need dental implants. They’ve been on a waiting list for the dental implant program at the SIU School of Dental Medicine for over five years. They’ve finally been approved and are ready to start work on their new smiles. Trouble is, their dental care is not covered by insurance. Letters of medical necessity have been written to no avail. Even with the 20% discount that the dental college can offer because of a relationship with the NFED, their care is expected to reach $60,000.
Dyllan, who is the oldest, has had impressions to start conventional dentures for him, that he’ll wear until the implant process is completed. The dental school won’t even order the teeth to go in the denture until my sister can pay $1272. Dyllan has said he wants his smile in time for Prom. He asked a girl to Prom, and she said Yes! Of course, he’ll wear a tux for Prom, and he told his Mom that NOTHING will go better with his Tux than his New Pearly Whites! Oh, my!
Denyse is legally disabled. She doesn’t have an extra $1272, let alone an extra $60K!
She’s started a GoFundMe for Smiles campaign, in hopes of raising the funds to get them the smiles they so deserve.
Would you consider giving to help them smile? Would you consider sharing their GoFundMe on your social media sites? I would greatly appreciate it.
You can donate using the widget above or by visiting the GoFundMe for Smiles page.
If you’re a blogger, check out how you can help even more by visiting my TBC GO Fund Me for Smiles page.