By Liz Timmerman, mother of 2 year old Violet from Michigan.
Just over a year ago, my youngest daughter was diagnosed with HED at the age of one years old. The first year of her life was filled with many challenges and I was seriously starting to doubt my abilities as a mother because my baby was always so unhappy, couldn’t eat and couldn’t sleep. She had mouth surgery at 6 weeks old and when her first teeth emerged around 10 months old, I was certain that the surgery had caused their pointy shape. After taking her back to the pediatric dentist that performed her mouth surgery we were given the diagnosis of Ectodermal Dysplasia. Despite the kindness and compassion our dentist showed to me, I left the dentist office crying and heart broken. What would her future look like? And my biggest fear – would she one day be too ashamed of her different teeth to smile? How would society treat her? Would she be seen as different? Would she feel different? How much emotional and physical pain was this genetic condition going to cause her?
A friend of mine had mentioned prior to our dentist’s diagnosis that a friend of her’s daughter had the same teeth and had a condition where she couldn’t sweat. I brushed off the comment, because after all, how are teeth and sweating even related? I was still certain that the laser used in her mouth surgery and damaged her teeth. Looking back, my friend’s comment was a small seed that was planted, allowing me to receive my daughter’s diagnosis without having to deal with shock on top of all of the other emotions. I went back to my friend a couple of days later and told her that she was right, and that Violet also had Ectodermal Dysplasia, and so many challenges that Violet had been dealing with were starting to make sense. My sadness was starting to give away to relief. My friend then put me in touch with the mom whose daughter also shared the same condition and after a conversation with her, I began to pick myself up and see hope again. This woman was filled with love and strength and gave me the shot of courage I needed to pull myself together and figure out a plan to help Violet.
I got in touch with the National Foundation of Ectodermal Dysplasia and read every Facebook post and blog post that I could find. It was comforting to hear other people’s stories and to learn about their journeys. And, a year later, I feel as though Violet is now a part of a special tribe, and fortunately for her, she will always know others with the same unique challenges.
My family and I became inspired to come up with a fundraiser to help raise awareness and money for Ectodermal Dysplasia. This summer I signed up to have a vendor booth at a very large Lavender Festival nearby which brags more than 10,000 attendees over a three day weekend in July. I am a beekeeper and make products from the beeswax, honey and plants in my yard. My first idea was to make a violet infused soap to sell as the fundraiser, named after of course Violet, but also, violets are known for their hydrating skin properties and often ectodermal dysplasia goes hand and hand with dry skin. Unfortunately, my first batch of violet infused soap turned out the color of puke and smelled horrible. I could continue trying to perfect the violet soap, or move on to another idea. Then my cousin, Violet’s Godmother, came up with the idea of having something to sell that would help cool customers down, as the festival always seems to be on the hottest day of the year. She even went so far as to donate several hundred cobalt blue glass spritz bottles to me and at that moment, inspired by her creative generosity, I knew what our fundraiser was going to be – a lavender cooling mist. Not only was it the perfect product to spread awareness and educate people on the rare condition, it was also the perfect purchase for a hot day at the Lavender Festival. We sold over 120 bottles of cooling mist infused with springs of dried lavender over the three-day festival and raised almost $700. Violet was very proud of her cooling mist, and we use the “mister” all summer long at our house to help Violet stay cool.
But the “coolest” part of the entire experience was meeting two other people affected by Ectodermal Dysplasia. The daughter of the woman who gave me my first pep talk after Violet’s diagnosis made a special trip to meet Violet when she heard about the fundraiser we were having. Meeting her was like meeting a long lost family member and it is so amazing to see the kind of person she is and to know that Violet will have a beautiful role model to help her journey forward. As if that wasn’t enough to make the fundraiser a complete success, a customer listened to my short blurb about the fundraiser and told me with surprise on her face that she believes she has ectodermal dysplasia but had never known there was a name for it, let alone a genetic condition. We were both near tears by the time she left my booth, and I hope that she joins the foundation and becomes connected to others who share the condition that both she and Violet have. Violet is only two, but as her mom, to find others that are facing the same challenges can mean the difference of feeling isolated and alone, or feeling supported and a part of a loving community.
This fundraiser was such a positive experience for our family, and it is my hope that we find ways to continue fundraising as a family for the NFED so that Violet will always know that because of her, we have found a cause worth working for, and because of her, we have been welcomed into a wonderful and caring community that we would have otherwise never known.