What have you let set you back today? This is a question that Cody Snell can answer with a smile. He has he never let anything including his x-linked hypohidrotic ectodermal dysplasia (XLHED) keep him from anything.
That includes playing sports year round while growing up and working 10-hour days in 120 degree heat as an adult. He has had a long journey with many obstacles. But he has pressed on to lead the best life he possibly can.
Cody, 32, was born and raised in New Mexico. It was not long after his birth, however, that Cody’s parents noticed something might be different with their little boy. His parents noticed that he would often act as if he was ill when he was only a few months old.
They would wrap him up in blankets, but this seemed to worsen his cries. His parents noticed that he never sweat and took him to the doctor for an explanation.
Finding a Diagnosis
Cody‘s parents took him to a genetic specialist at the University of New Mexico who clinically diagnosed him with ectodermal dysplasia at one year of age. Cody is the first member of his family to have ectodermal dysplasia.
The diagnosis did not faze Cody or his family as he grew up. Cody‘s parents encouraged him to participate in sports such as football and wrestling. His parents reached out to the National Foundation for Ectodermal Dysplasias (NFED) for assistance in purchasing a cooling vest.
Cody knew that when he got too hot, he needed to take breaks to cool down and drink lots of water. He never thought of quitting any sport or activity because of his condition. Cody’s love of the game beat the heat.
His Expensive Smile
Another obstacle Cody quickly overcame was his smile. Cody began his dental journey at the young age of four, when he received his first set of dentures. He was not a big fan of them.
“They got pulled out when I was eating a Sugar Daddy, and after that I hardly ever wore them,” Cody said.
Lack of dentures never slowed him down at the dinner table. Cody says the only foods this kept him from eating were “steak and nuts.”
Cody embraced the six teeth he was born with until he reached adulthood. This is another great example of Cody’s can-do attitude towards his life.
In 2011, Cody decided to further his dental work with a corrective jaw, or orthognathic surgery, by Dr. Jerry Jones in Albuquerque. Following that procedure, they performed a bone graft and six dental implants.
His dental insurance paid 60 percent of the temporary dentures after his teeth were pulled, and his health insurance paid $2,000 toward his orthodontic surgeries. Needless, to say the procedures cost a great deal.
“My out-of-pocket totaled approximately $35,000,” Cody said. “I continue to have considerable costs about three times a year as the top teeth break. This costs me about $150 to $200 each time.”
His smile will continue to be a large investment as his dental journey continues throughout his life.
Living with XLHED as a Parent
Cody married his wife Sherice in 2013. Two years later, they welcomed a daughter. Jacquelynn brought many changes into Cody and Sherice’s lives when she was genetically diagnosed to be a carrier of XLHED.
Fatherhood prompted Cody to reconnect with the NFED and has since been in contact to find local dentists to work with his family.
He has also used NFED’s Facebook to connect with families all over the country.
“Other than my daughter, I have never met anyone else affected,” Cody said. He connects with others who are affected and engages with the ectodermal dysplasias community through social media.
Just as his parents raised him, Cody never lets Jacquelynn’s XLHED bar her from the outdoors. He laughs as he even considers stopping her.
“Her favorite thing to do is play outside all day, so we just have to adapt.”
They keep their trusty Misty-Mate with them wherever they go and carry water-soaked bandanas to make sure they both stay cool as the day goes on. Drinking water is also important to the family, so having plenty to drink at each meal is a staple in their household. This allows Jacquelynn to have all the fun she wants while still keeping her safe. Cody recommends this method to all parents.
Don’t let it limit what you do. The kids can do everything. They just need a few extra resources and to be encouraged to be outgoing and embrace it. – Cody
11 comments on “Cody’s Limitless Life”
Cody, you such an inspiration for me and hopefully for my son. He is 1.5 years old now and I’d like him to grow up as strong as you are. By the way, I was not tested but our genetic doc considers me as a carrier of XLHED. If you don’t mind I would like to stay in touch.
Thank you and sure thing!
I think your story is really cool and gives me great hope for my little boy who is going on 3 now..I would love to stay in touch or be friends of fb..
Thank you Michael! I’m sure he will grow up great! And sure thing you can add me.
Great story! I grew up in Minnesota and my mom was always worried about me. I’m a carrier for XLHED. My son is 2.5 years old and has it and we aren’t going to limit what he can do. He’s even telling us “too hot mama” so he can articulate when he’s warm. We love encouraging his love of life and finding ways of supporting his wild spirit to keep journeying outside.
Way to live life! Keep it up and be sure to jump in cold water 🙂
Hello! I am from Argentina, but I have lived in Texas from to years. I lived with HED without knowing it all my life, none of the doctors who have treated me for other issues have given me an idea that I had this condition. At 10 years old a dentist wanted to expose me to a university class because I was the rarest case that he had. I felt like a weird circus character. I think he was as ignorant as I was on the genetic disorder. I Take note of HED with my 1 year old son, when his first tooth came out conically. And by then I already had noticed that he suffered a lot with the high temperatures. Thank god a pediatric dentist gave me the previus diagnosis and we went to visit a geneticist at the Texans Childrens Hospital. I feel very guilty for having transmitted this gene to my son but reading you gives me hope that he will have a good life! Thank you!
Hi, Lucia. We are sorry to hear about your experience as a child. We are grateful that you found a diagnosis for you and your son. We know from families that guilt is a common reaction to a genetic diagnosis. However, please don’t feel guilty! We encourage you to check out more information on Coping with a Diagnosis at https://nfed.org/thrive/coping-with-diagnosis/. If you would like to talk, please contact us at the National Foundation for Ectodermal Dysplasias at 618-566-2020. We are here to help and to listen. Your son, can indeed, have a great life, rest assured!
Cody really u r great, want to add u in fb, so that I can raise my son like u.
Hi Cody! I was born with a cleft lip & palate and am really passionate about getting the ELSA act passed. I saw you were an activist in the state of NM for this. Would it be possible for us to get in touch?
Hello, Taite. You can also reach out to Becky at firstname.lastname@example.org and ask her to connect you with Cody. Thank you for advocating for the Ensuring Lasting Smiles Act!