Dave Reidenouer is the kind of dad and grandpa who jumps in to help when his family needs him.
For him, family means, “coming together to overcome obstacles and challenges, working together to do fun and good things.”
And that’s exactly what his family has done since their first grandchild, Nikko Vecchini, was born five years ago to Dave’s daughter, Lacie Reidenouer, and Joel Vecchini.
When Nikko turned one and had not yet developed teeth, health care professionals told his parents, “don’t worry.” Six months passed. Then 12. Still no teeth for Nikko.
A pediatric dentist told them to not overreact, there was still a chance he could develop teeth. Lacie and Joel decided to get other opinions.
Dave’s dentist referred them to a pediatric dentist who explained that Nikko might have this rare genetic condition. Nikko’s pediatrician set up genetic testing, and the results confirmed it. He was affected by hypohidrotic ectodermal dysplasia.
Having never heard of it, Lacie and her mom, Kathy Reidenouer, took the news hard at first. Lacie was understandably upset and worried how kids in school might treat him.
People are cruel in the real world. I don’t want him to face that kind of cruelty that I can’t protect him from. That’s what we mean when we say we were heartbroken.
– Lacie
A Place to Turn
It was Kathy who Googled Nikko’s condition and landed on the National Foundation for Ectodermal Dysplasias (NFED) website.
“We were pretty devastated,” Kathy said. “But, I know my husband and he’s not going to stop until he learns. Once we got going, we realized this isn’t going to be a major issue – just an obstacle.”
Home for the Vecchini / Reidenouer family is Lockport, New York. Home for their newly found ectodermal dysplasias family is the NFED.
“We read and read and read,” Dave said. “The NFED website is an enormous amount of information and helpful hints from other families. That’s when we started learning what to do, what not to do, certain guidelines, where to look.”
The Reidenouers and Vecchinis instantly could feel from the website that the NFED members were like a family. And they were right.
“The NFED website was a major, major help,” Dave said. “There’s so much quality information and other experiences on there that let you know what you’re in store for and what to look for. I immediately jumped on the bandwagon and felt obligated to help them.”
Earning Team Nikko’s Respect
The family learned the NFED was holding a Family Conference in the summer of 2019. Grandpa Dave decided to scout it out and see if the gathering would match the impressive online experience they had with the foundation. The staff welcomed him with open arms.
“I was overly impressed with the whole Family Conference. I was impressed by the sincerity of the people. You had professionals in the dental and medical industry where you could have a face-to-face question and answer period. They answered you honestly, looked you in the eye. You can feel the hard work the NFED people do.”
Dave decided to take action and give back after the NFED won his confidence and and respect. They rallied Team Nikko – their community of family and friends – to support him and the NFED. The family has now held three fundraisers in Nikko’s honor with Dave taking the lead. Their efforts have raised almost $53,000 for the NFED.
We’re not raising money for us. We’re raising money for the organization that represents what he has and helps everybody.”
– Dave
An Outdoorsy Kid
Nikko is now 5 1/2 years old and thriving! He’s learned what to do when he gets hot. He takes his spray bottle, a hat and water when he heads outside – his favorite place to be. He dreams of being a pilot of a jet plane. Nikko says that he loves spending time together with his family.
Grandpa Dave plans to start taking Nikko to see his NFED family, too. He doesn’t know if he can make every conference, but he wants to start taking Nikko to them.
My ultimate goal is for him to get more involved in the NFED, to be a leader at the NFED, and to help other kids.
– Dave
The Reidenouers and Vecchinis have embraced the NFED’s belief to have high expectations for children affected by ectodermal dysplasia.
“He (Nikko) doesn’t need anyone to feel sorry for him. He needs us to learn what this is all about so we can teach him and help him and make life as normal as possible.”
And that’s exactly what the family is doing. And with NFED’s support.
Will You Help?
Home is a special place where you find the ones you love and care about and the ones who care about you.
You can help the NFED continue to be the home for families around the world like the Reidenouers and Vecchinis. A place where they receive accurate information, heartfelt support and the peace of mind to know that things are going to be ok. Make your year-end gift now.
Thank you for being a part of our family!
More than a foundation…a family!
The National Foundation for Ectodermal Dysplasias is a 501c3 nonprofit. Donations made to the NFED are tax deductible as allowed by law.