Dear Santa

December 12, 2017December 12, 2017 Category: News Posted by NFED

Dear Santa,

We hope all is going well with your Christmas preparations. We know you’re a very busy man, so we’ll cut right to the chase.

As you know, the National Foundation for Ectodermal Dysplasias’ (NFED) mission is to empower and connect those touched by ectodermal dysplasia. Our staff and our team of volunteers work hard year-round to help raise awareness, raise money for research, and to provide loving support to the ectodermal dysplasias community.

For Christmas this year, we wish for there to be a law mandating that dental care be included under health care benefits. While we’re at it, how about affordable health and dental care for all? In our community, it’s not only old folks who might need dentures, but little kids as young as three! Santa, would you provide dentures for every child and adult who needs them?

We’re not sure how often you keep in touch with the ghosts of Christmas Past, Present and Future, but perhaps you could send them off to visit some members of our government, to remind them of the importance of affordable and accessible health care for all.

On the topic of healthcare

Santa, help us find providers who will listen mindfully to patients, and who will take it upon themselves to learn everything they can about ectodermal dysplasias.

Santa, you and your elves may be sweating away as you prepare all those Christmas joys, but we’ve got to let you know; many people with ectodermal dysplasias can’t sweat at all! We know body parts aren’t really your specialty, but if there’s any way you can slip a few sweat glands under our trees? If not, we’ll settle for cooling vests and handheld mister fans for everyone instead.

In all your years of traveling the world, surely you’ve come across some generous people. We hope you’ll work a little Christmas magic and compel them to make plentiful donations to the NFED.

Most of all Santa, we hope you’ll spread our message to one and all – that people with rare conditions just want to live content, happy lives with their families, just like everyone else. Through the power of the internet, let the knowledge of rare conditions like ectodermal dysplasias spread far and wide so that doctors and dentists everywhere will learn about it and be understanding of their patients’ conditions.

Santa, we don’t ask these things for selfish reasons.

We ask for all those in our NFED community:

• For the baby boy, who grows too hot in his warm winter clothes – let his parents learn quickly how to cool him, and how to dress him so he will not overheat.
• For the children with no teeth, or teeth that don’t have healthy enamel on them – let them have gentle, caring dentists to help them be able to eat healthy food and smile healthy smiles.
• For the little girl who dreams of long princess hair – let her wake up to a beautiful wig this Christmas.
• For the kids who yearn to play sports under the hot sun, or in un-air-conditioned gyms – let them find cooling techniques that will work for them, and especially, let them have supportive friends, who will notice them getting hot, and help them cool off quickly.
• For the teen who just wants to fit in at school – let the awareness of rare conditions be universal, so that instead of being laughed at for looking different, this teen is accepted for the excellent musician, or artist, or science-geek they are.
• For recent graduates going out into the world – let them feel confident in their abilities and strong, so they do not easily succumb to workplace discrimination, or to their own self-doubt.
• For the new parents, whose child is exhibiting signs of ectodermal dysplasia – let them find the NFED quickly, and the wonderfully supportive community and vast wealth of knowledge there.
• For the grown-ups, those who have weathered many storms, from fighting bullies in childhood to fighting insurance companies in adulthood, yet who remain positive, successful adults – let them receive the affordable health and dental care they need, so they can enjoy life and not fear going bankrupt paying for their next medical necessity.
• For the oldest among us, who face the unknowns of aging with ectodermal dysplasia, the losses of eyesight, of hearing, of more teeth – let them be surrounded by the love of their families, friends, and caretakers.

Santa, we know all that is a lot to ask of you, but we know you’ve got connections. Help us spread our message across the globe, so that those who can help will reach out. Whether it is to volunteer, to donate or to spread knowledge of the NFED, we will appreciate it all this holiday season.

Thanks, Santa. Fly safe!

Your friends at the NFED

 

Heather McKelvie is a guest blogger for the NFED. Affected by ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome, she volunteers for the NFED as a family liaison.