Thank you so much for taking the time to visit! In January 2008 our family was blessed with a beautiful little girl, Skylar Paisley Vaughan. Today she is a bright and playful 3 year old sweetheart. Last year, little Sky was diagnosed with a rare genetic condition, Ectodermal Dysplasia. This condition effects the ectoderm, or the cells that make up the hair, skin, nails, and mucous membranes. Skylar has only 2 deformed teeth and very little lower jaw bone. She will require many sets of dentures during her lifetime. She has very fair, thin, translucent skin. Although this makes her a natural beauty, she has limited sweat glands making overheating a constant concern during warm weather. Skylar is a natural blonde-haired gal, but her hair is thin and extremely fragile. She will possibly want to wear a wig as she grows up. Another part of Skylar's condition, and probably the most troublesome, are very dry mucous membranes of the nose, mouth, and intestinal tract. She gets frequent sinus and ear infections and has already had 3 surgeries to help correct some of her problems. This is a lot for a little one to go through, but she is a brave girl and always charms the medical staff taking care of her!
The reason we have formed "A Smile for Skylar" is to help offset her medical costs. Unfortunately, Skylar's condition isn't always recognized by insurance companies. Some of her treatment may fall under "cosmetic" purposes although it is caused by a known medical condition. The out-of-pocket expenses are extremely high and difficult for any family to manage. In addition to raising awareness about Ectodermal Dysplasia, it is our hope we can help contribute and ease the financial burden for Skylar and the Vaughan family.
Thank you so much for taking the time to learn more about Skylar!
Laura, I have met Skylar before and she is such a sweet little girl. Whenever you need help putting together a fundraiser for her please let me know. Allison Bell
ReplyDeleteHello everyone, this is Mike and Courtney, the parents of the beautiful little girl on this page. We want to say thank you to everyone who visits to learn more about our daughter. Also, we want to thank Laura for setting all of this up for her. Sky is so lucky to have such a caring family around to help out. We will be checking in often to give everyone updates on how she is doing. Thanks again everyone!
ReplyDeleteMy daughter has ED and she is now 15. It has been a long road to a beautiful smile. As a matter of fact, she went back to the dentist yesterday to have her dentures refitted b/c they hurt so badly. She will still need her jaw reset and implants. We know how difficult and overwhelming it all can be esp. when insurance considers these necessities a cosmetic procedure. My daughter would love to come to Chic-fil-a to meet Skylar and her family and to encourage them as they look toward Skylar's bright future. Hope to see you on the 14th.
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