A Grandmother’s Take on Ectodermal Dysplasia

April 10, 2018October 23, 2018 Category: Stories of Hope Posted by NFED

As a baby, Weston Walker experienced all of the same issues his mom, Randi, had when she was born. He struggled to breathe. He choked and spit up a lot. He didn’t cut teeth.

For Debbie Reed, Randi’s mom and Weston’s grandma, it was heartbreaking to live it all over again. They visited doctor after doctor, asking if this was normal. Finally, Randi’s brother, Rick, searched Weston’s symptoms online and learned it could be ectodermal dysplasia. He also found the National Foundation for Ectodermal Dysplasias (NFED). It all made sense.

Debbie went with Randi and Weston to Texas Children’s Hospital to get tested for the condition. It wasn’t a shock to them when the test was positive. Weston was affected by x-linked hypohidrotic ectodermal dysplasia (XLHED). It explained his sparse hair, intolerance to heat because he couldn’t sweat, his missing teeth and other issues. Randi’s test also was positive for being a carrier of XLHED.

“We finally knew what was wrong. It was a relief. The uphill battle was the time of not knowing. Once we found the right doctor and the right people at the NFED, it was easier.

Knowing is Better

Debbie would continue to go with Randi to all of Weston’s doctor appointments. For this loving mom and grandma, it was a very emotional time. She and her husband, Bob, reflected on Randi’s childhood and what they didn’t know at the time. Randi didn’t cut her first tooth until she was 18 months old.

“It would have been so much better to have known. I second guessed myself in terms of Randi’s childhood. How we could have helped her with these issues if only we had known. Bob’s heart and mine were breaking. At first, Randi and I didn’t talk about it because we didn’t want to upset each other. We were just too emotional. We focused on Weston and making him feel better.”

In 2011,  the Reeds accompanied Randi and husband, Marshall, on their trip to the NFED Family Conference.

“I was in awe. It (conference) opened my eyes and changed my view of the world,” Debbie said. “I learned this diagnosis was a huge blessing, not a problem. I looked at life very differently after that. It humbled me more.”

“There are more differences in appearances. I became more aware that God didn’t make us all the same. And that was a good thing. There was a plan and we had to figure it out. Without others, we wouldn’t. I was very grateful to have Randi, the kids and the NFED families.”

Time to Give Back

Debbie was incredibly moved by their experience at the Family Conference. She knew that she wanted to give back.

“I thought about how one woman (NFED founder Mary K. Richter) in 1981 could start and grow an organization. It doesn’t happen overnight. Money is the backbone of what we need to find a cure.”

Because the family has a large network of families and friends, Randi and Debbie decided to fundraise and increase  awareness together. The Reeds live on the coast in south Texas. Randi and Marshall now have four children and live in Louisiana. Weston was later joined by Finley and twin sisters, Chloe and Hattie. All four children have XLHED.

Debbie started taking action each February during Ectodermal Dysplasias Awareness Month. For years, she would share information about ectodermal dysplasias and NFED posts on her Facebook page.

“When you personalize facts, people take the time to become more aware. They stop, look, share and comment. I always ask Randi’s permission before I share anything.”

The Reeds and the Walkers have done a few different fundraisers over the years from a golf tournament to a raffle. This year, the family tried something different for the NFED during Ectodermal Dysplasias Awareness Month.

Because they have some of the best fishing on the coast, Debbie decided to raffle a guided fishing trip. Her son, Rick, is a member of a group called the Texas Trio, which hosts large fishing contests and then donates the proceeds to charities. The men in Texas Trio donated their services for free to provide the guided fishing trip. Debbie talked to NFED’s Lea Richardson who helped her create a flyer. They sold tickets for $5 or 5 for $20. This committed mom and grandma took to Facebook to market the raffle.

“Every other day in February, I would get my coffee and sit down at the computer,” Debbie said. “I would post something about Randi or the kids. I would use information and posts from the NFED. Randi helped me, too. She and Bob would share my posts on their own pages. My sons, aunts and family members did, too. It was very simple. One post had 1,000 people like it!”

Her marketing was not only good for raffle sales, but good for her, too.

“It was good therapy for me,” said Debbie. “Different people commented that they didn’t know this was in our family. I told them, we all have struggles.”

Keys to Fundraising Success

The Reed and Walker families’ raffle made an amazing $7,000 for the NFED. Debbie said there were two things key to her success: personalizing the posts and sending written thank you notes to each donor.

“The key is to personalize your posts rather than just sharing information about ectodermal dysplasias. I also hand write a personal note to every single person who donates, no matter what amount. I believe strongly in that.”

This Texas grandma encourages others families to fundraise.

“It doesn’t take much effort. It doesn’t have to be as complicated as a golf tournament like we did. As the kids gets older, we know it’s harder to have the time to pull that off. Start little. It doesn’t take money. People will give even without a drawing. Making people aware of ectodermal dysplasias and the NFED is a gift. Just do it!

It Will Be Ok

“It took a while in our journey to get to this point where we could share it publicly,”  Debbie said. “I’m proud of Randi who is an NFED family liaison and often helps other moms by talking to them late at night. She’s been where they are. I can remember that first Family Conference. We cried a lot. They were happy tears. Our kids feel at home there. They know they fit.”

Debbie’s dream for Randi was that she would be a better mom than Debbie was. She says her dream came true.

“I remember when Randi in kindergarten. She entered a talent contest and sang, ‘Somewhere Over the Rainbow.’ I watched the confidence she had at five years old and knew that confidence would take her places.  Randi’s a better mom than I ever was!

For her four grandkids, Debbie dreams of a cure for XLHED.

“I pray for them so that they won’t have to struggle. We teach them to be brave and know that having this condition is not the end of the world. They are going to be fine and that this doesn’t define them. Summer is not a lot of fun but we just go with the flow.”

Being a grandparent can be harder than a parent.

“I’m more protective of my grandkids than I ever was of my own three kids. I just fall apart if something happens to them. Parenting is not easy and people can be cruel. I tell people not to stare. The kid just wants you to smile at them. Come to me instead. I’ll explain it to you.”

But she knows from going to NFED Family Conferences, that the kids are going to be ok.

“I encourage any grandparent of a child with ectodermal dysplasia to go to a Family Conference. Make the effort. It will change your life. The support is there. It will be ok.

“I can’t beat the drum enough for the NFED – how a few people can touch so many in the U.S. and all over the world. It’s humbling!”

 

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