By Karina Luna
I am the proud parent of a child with hypohidrotic ectodermal dysplasia. When my son, Liam, 4, was first diagnosed, I was completely blindsided. His father, Leonardo, and I had never heard of this rare condition, nor did we know how unique his upbringing would be because of it.
Upon finding the National Foundation for Ectodermal Dysplasias (NFED), we were immediately relieved. Although the condition was rare, there was an entire community of people who were not only familiar with it but had a one-stop-shop offering emotional support, financial aid and invaluable references for treatment.
Volunteering has always been an ideal for me, but not something that I have always been able to act on. Because of our busy schedules, it becomes difficult to set time aside to be proactive in our community. When the NFED announced that they would be coming to Fairfax, Va. for the Family Conference and reached out to see if I wanted to be a part of the Family Conference Planning Committee, I was thrilled. This was an opportunity to be a part of the organization that has provided so much hope to our family.
As a part of the committee, I gained insight into how much work goes into a single event. There are a million tiny details that need to be considered and it truly “takes a village” to pull it off! Volunteering is not always easy; I learned early on that obtaining sponsorships is not my calling, but there is definitely room for improvement.
More importantly, however, there were many priceless moments that touched my soul, like when I (actually) spoke up on Capitol Hill for Ectodermal Dysplasias Advocacy Day. As an introvert, it was my proudest moment knowing that I could step out of my comfort zone to advocate for my son!
Another joyful instance was when Leo and I put together the last of the welcome brochures. It was truly fulfilling knowing we had contributed in some small way to an event that would make a difference to many people.
During the actual conference, Leo volunteered to run one of the fundraising booths and was able to bond with a lot of the families and their children. His proudest moment may have been when he swooped in to save the day after one of the card machines had stopped working or when he and a few other dads raised funds through a little friendly competition.
As volunteers, it was extremely rewarding to see everything come together and to know that we played a role, no matter how small, in the preparations. I cannot tell you how many times I cried during this conference listening to testimonials and seeing the bright and smiling faces of the kids, teens, and adults affected by ectoderm, l dysplasia. It was remarkable how many families from different cultures and walks of life came together as a community, or even as an extended family, because of our special bond.
We left the Family Conference feeling empowered and inspired by other families who support the NFED through awareness campaigns and fundraising. We have been brainstorming ever since for ways that we as a family can be more proactive in assisting our NFED community. Our next steps are to return to Capitol Hill and our goal is to turn a few birthdays into fundraisers.
This experience has taught me that volunteers are true heroes and that there is nothing more gratifying than giving your time to bring even a second of happiness to others. As a family, we know that it takes a village and we love our village!
Karina Luna is a guest blogger for the NFED. She is the mother of son, Liam, who is affected by hypohidrotic ectodermal dysplasia.