Today, we rise up and celebrate all of the caregivers around the world as part of Ectodermal Dysplasias Awareness Month! We pay tribute to everyone who has made someone’s ectodermal dysplasia journey a little easier. They lead with their heart and give love and hope in the process.
We asked our families which of their caregivers they wanted to recognize and celebrate. Here’s what some of them shared.
A Selfless Mother
Caregivers are people who put others’ needs before their own. They ensure that their loved ones are living a happy and healthy life. For many people affected by ectodermal dysplasias, like Josh Maier, their favorite caregiver is a parent.
Twenty-nine-year-old Josh has more surgeries than he does years under his belt due to his unknown type of ectodermal dysplasia. He credits his mom, Shelly Maier, who has her own significant health issues, for being his extraordinary caregiver. She helped him, as well as his dad and brother who are also affected by ectodermal dysplasia, through it all.
“I don’t think I would be here today and certainly wouldn’t be the same person I am if I didn’t have my mom giving up everything for me,” Josh said. “Without her in my corner, the world would be a very different place.”
According to Josh, his mom is a saint and will gladly give you the last of anything she has, even if she needs it. And, she does it with a smile on her face.
“My mom is the reason I am the man I am today. She taught me that I am more than what I have. That it’s okay to be different and even to be upset and angry or even jealous of others who don’t have my issues but that it is not who I am. It’s just a name on a piece of paper or website. That ‘Josh is not ectodermal dysplasia. He merely has it’.– Josh Maier
It can be overwhelming for families when their child is diagnosed with ectodermal dysplasia. There is so much to learn and so many feelings to process as caregivers. People around you may or may not know exactly what to do for you. But good caregivers are the ones who show up and help anyway.
“Caregivers are amazingly, resilient and strong people,” Josh said. “My mom became what she needed to be for her children, even when she had no idea what to do or how to help in some cases. She worked through it and found us the help we needed – and still does.”
It Takes a Village
Another young adult, Ashley Turner, salutes her parents for the positive role they have played in her life. The 28-year-old from Connecticut is affected by hypohidrotic ectodermal dysplasia (HED) and has actively celebrated Ectodermal Dysplasias Awareness Month for the past few years.
“If anyone needs the biggest thank you in the world, it would be my parents! They’re the ones who made it possible for me to smile. I wouldn’t be the happy, confident person I am today without everything they did to make my process a little bit easier!”– Ashley Turner
Putting the Care in Care Provider
Our families often need help from a team of people to address their various needs related to ectodermal dysplasias. Dentists often become beloved members of the families’ caregiving team.
Having a person or a team of people who not only provide treatment for you but actually care about you as a person can transform your life. Melissa Pierce is an NFED mom who appreciates her pediatric dentist and how he’s changed their lives by diagnosing her son.
“Dr. Dave Olson is [the one] who noticed Keller’s ectodermal dysplasia. He studied years before under Dr. [Tim] Wright at the University of North Carolina and was the first and only person to recognize what was going on with Keller. We are so very grateful for him!”
No matter where you live, having a great caregiver is to be celebrated. For Helen Tymbos-Sanidas and her family in Canada, they love the dentist who led them to a diagnosis and a path to treatment.
“Dr. Marshall Freilich, our maxillofacial surgeon in Toronto, has been a lifesaver for us! All three of my daughters (and me) all suffer with missing teeth. We had been to dentists, orthodontists – you name it.
We were hunkering down to figure out how to pay for the orthodontic treatment (two times per kid), and the massive reconstruction which followed – without a diagnosis other than oligodontia.
Dr. Freilich became our champion and pushed for us to get genetic testing (which still came back inconclusive) but with a clinical diagnosis of ectodermal dysplasia, we were able to obtain funding from the government (Canada) to help offset the costs. He performed amazing bone graft surgeries on the girls – getting bone from their hip to build up areas for implants. He connected us with an amazing prosthodontist.
He is a brilliant surgeon, a shoulder to cry on and an overall incredible human being. He found ways to help us through the physical and emotional challenges of ectodermal dysplasia. Thanks to him, my daughters have beautiful, healthy smiles. We wouldn’t have been able to survive this very long and hard journey without him. The Sanidas girls love you very much Dr. Freilich!”– Helen Tymbos-Sanidas
Caregivers at School
Sending your little one off to school can come with sleepless nights and endless worrying. Will he overheat? Will she know when she needs to cool off? Will they lose their dentures at lunch? Building a team of caregivers at school to support your kiddos can put your worries to rest. Just ask Valerie Montgomery of Tennessee.
The Montgomery Family
“When it was time to send my five-year-old son, Latham, to kindergarten in 2015, I worried,” Valerie Montgomery said. “Sending your very first kiddo to kindergarten can be hard for a mom. As a mom of a non-sweating child with ectodermal dysplasia, I also worried about him overheating. I knew if he overheated at school and it was allowed to progress, it could become life-threatening.”
“I prayed that Latham would land in the right teacher’s class,” Valerie said. “My prayers were answered when he started his Tara Oaks Elementary career in Mrs. Gayle Moss’s kindergarten class. Each year, I prayed the same. Latham always seemed to land in the right teacher’s room. However, it’s so much more than just landing in the right room.
“Over the past six years, I have seen so many Tara Oaks staff members stepping in and intervening for Latham. I remember one instance in particular.”
It was a very hot afternoon and I observed a staff member whom I didn’t know reach into Latham’s book bag and retrieve his cooling supplies for him. She had recognized that he was starting to have trouble while standing in the car pick up line. I was in awe of this person who I didn’t know making sure my son didn’t overheat.– Valerie Montgomery
“The truth is that it’s not just one teacher. It’s all of the teachers and staff that create a safe environment where a child like mine can learn and thrive. Everyone from the school nurse to the secretary.
“It takes a village to keep a non-sweating child safe for six years. I will forever be thankful to Tara Oaks Elementary. As my son heads off to middle school next year and leaves Tara Oaks behind, I say thank you. We couldn’t have done it without you!”
Rise Up and Celebrate Your Caregivers
Let’s hear it for all of those parents, grandparents, extended family, doctors, dentists, school nurses, teachers, coaches and friends who rise up and show they care. Thank you for stepping up, showing up and simply caring – time and again. You are our heroes!
Who do you want to celebrate for being your wonderful caregiver? Tell us who and why in the comments below.
Or, salute your caregiver on your social media and use our hashtag #RiseUp4Rare.