By Debbie Reed

Reed Family

My life changed December 19, 2006, when our first grandchild, Weston Reed Walker, was born.

I’m from a family of nine children so I understand the true meaning of loving and caring unconditionally. I was brought up on a family ranch and now my

Debbie & Bob Reed and their grandkids, Weston, Finley, Hattie, and Chloe.

husband and I farm. So, we both know what hard work and struggles mean to survive. I am also a retired school teacher with 30 years of service.

But I feel very blessed to be a grandma of “8”, four of which have hypohidrotic ectodermal dysplasia. Plus, our daughter, Randi, is a carrier.

The definition of volunteer is a person who offers himself/herself for a service without obligation to do so. I’m not sure I call what I do, being a volunteer. But, I know lots of people who give on a daily basis to help others from the goodness of their hearts. My life changed when Weston and Randi were diagnosed with this genetic disorder.

We started fundraising in 2010, right after Randi, Marshall (Randi’s husband), and Weston attended their very first National Foundation for Ectodermal Dysplasias (NFED) Family Conference. We started with a huge golf classic, which took tons of true volunteers coming together for our grandson and the NFED.  We’ve been fundraising ever since, some small, some big, but all because of our family and friends who volunteer their time and money to support us.

I’ve attended several Family Conferences with Randi and her four children, Weston, Finley, Hattie, and Chloe. Each time I see and meet families all across this country coming together to learn and support each other, share stories, smiles, and sometimes tears knowing that they are not alone in their journey.

Attending a Family Conference will change your life. To watch the parents, their kids, the long, lasting friendships that are made truly touches your heart deeply. God didn’t make us all alike and that’s okay.

Debbie’s fundraiser during Awareness Month.

For the last few years, I’ve been posting daily on my Facebook page for the entire month of February, which is Ectodermal Dysplasias Awareness Month. I believe this has been very rewarding to me.  The support, the likes, the shares, the comments have been overwhelming.

My goal was just to spread awareness about these genetic disorders. But, the blessing I’ve received by writing daily about ectodermal dysplasias, my daughter and her children has been by far, my greatest reward.  We’ve also combined a fundraiser during this month which has been a huge success, also.

So, to be a volunteer isn’t hard when you have compassion and will to try and make life just a little bit easier and to help people understand that:  We are different. Don’t judge. Understand instead.

People will forget what you said, forget what you did, BUT will NEVER forget how you made them feel! No act of kindness, no matter how small, is ever wasted.

Randi, Weston, Finley, Hattie & Chloe


Debbie Reed is a guest blogger and volunteer for the NFED. You can also read her Grandmother’s Take on Ectodermal Dysplasia.


Learn About Volunteer Opportunities at the NFED



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