Gina Quintanar was a National Foundation for Ectodermal Dysplasias’ (NFED) mom and volunteer whose big heart touched so many lives. We are saddened to share that Gina died last month at the age of 60.
Gina and her husband, Luis, first found the NFED in 1999 when they were looking for resources to help their six-month-old son, Alex, who is affected by hypohidrotic ectodermal dysplasia (HED).
Fast forward 10 years to when the threesome and daughter, Tessie, arrived at their first Family Conference in Colorado Springs filled with questions and excitement. Gina recalled that experience in a letter to the NFED.
“…I think about my family’s first conference. I was so excited because I knew what it would mean for Alex. For the first time, he would meet and get to know people who were as he put it, ‘just like me.’ I remember the love and acceptance I felt at the door.”
Gina’s outgoing personality meant she never met a stranger. It wasn’t long before she had befriended the NFED staff and many families.
A Second Mother
The Quintanars left that first conference with hope, and Gina left with a determination to give back to the NFED family, which had given so much to her family. For the next decade, Gina actively volunteered for the Foundation in many ways.
In 2012, she began serving as a Family Liaison for Southern California and Hawaii.
Kelley Atchison from the NFED staff leads the Family Liaison Program and got to work closely with Gina.
“Gina served as a Family Liaison for many years,” Kelley said. “She welcomed any family with open arms and a loving heart. Gina always offered motherly advice. She was fun and funny and always volunteered to help when needed.”
One of the tips that Gina shared with families was a business card she had made for Alex. When he was little, he or his parents would hand out the card if someone was staring at him. It was a way to educate people and empower Alex.
Gina talked with and mentored many families on their ectodermal dysplasias journeys. Shay Eiler is one of the moms she helped.
There aren’t words to express how sad my heart is. Gina Q was the best ‘adopted mom’ any girl could ever ask for. We met so many years ago when the triplets were just infants and became instant family. There are not enough words in this world to describe this amazing woman and how much she meant to so many. She touched everyone’s lives she came in to contact with. We have shared so many laughs, tears, vacations and memories. I will love you always, Gina.– Shay Eiler
Chance Auction Queen
For several years, the Quintanars became regulars at the Family Conference. Gina looked out for other parents, made them feel welcome and gave them hope. Always wanting to help, Gina and her family often chaired the chance auction at the Conferences. She organized and worked the fundraiser.
Gina explained why she volunteered in a blog she wrote called, “How Could I Make a Difference.”
“When the idea of fundraising came up, I jumped on it because I wanted to give back to an organization who has given so much to my son and to my family. I always thought, I would if I could, but my husband and I don’t make much money so I didn’t have the money to donate. So what could I do, how could I make a difference? I chose to make a difference by becoming a Family Liaison so I could be that supportive listening ear for someone else and running the chance auction at the Family Conference to raise a little money along the way.”
Heart Felt Gratitude
Gina also went out of her way to express gratitude. After the 2012 Family Conference, Gina solicited families to write thank you letters to the staff and turned them into a beautiful scrapbook that we treasure. For Jodi Edgar Reinhardt’s 20th anniversary on the NFED staff, Gina surprised her by having 20 kids and young adults with ectodermal dysplasia stand up at the Conference and express their gratitude.
Mary Fete, NFED executive director, expressed the sadness the staff is feeling.
“We sure are going to miss Gina! She was a volunteer whom we could always count on. Her ever present smile and caring heart made her such a joy to be around at Family Conferences. We will always remember Gina and think of her with love every time we work on the Family Conference, especially during the chance auction. It was her favorite thing to do!”
Our thoughts and gratitude go out to Luis, Alex, Tessie and granddaughter, Aria, for sharing their mom and grandma with us for all of these years. She was incredibly proud of Alex, now a college student, and the young man he had become.
For all she did for us, thank you, Gina!
Did Gina touch your life? Share with us in the comments below.
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