Kelsey Clark felt alone and isolated when her five-year-old daughter Charlee was diagnosed with Rett syndrome in April 2019. Kelsey, her partner Jordan, Charlee, and their two-year-old son Bennett live just over an hour from New Orleans in the small town of Amite—population 4,200—and had never even heard of the disease before.
Kelsey’s grandmother, a new Facebook user, was scrolling through her feed when a video of seven-year-old Anna Oalmann on Rettsyndrome.org’s Facebook Page stopped her in her tracks. Although Anna has Rett syndrome, she was walking in the video, and the Rett community was cheering her on in the comments. “My grandma told me I had to see it,” shares Kelsey. “I was impressed by it and watched it, crying my eyes out.”
That led to her reaching out to Rettsyndrome.org for resources and information. Tim Frank, Director of Marketing and Communications, called her back and made sure the team at Rettsyndrome.org sent her the Rett syndrome handbook.
“I stayed up all the night the first night I got it. Any questions I have and if I’m feeling down, I look in it. If you’re having those sad days and don’t know what to do, you look in it and there are parent stories and poems, and you know you’re not alone in the world.”
Tim also told Kelsey there were other Rett families near her; in particular, Anna, the little girl in the video, lives just 20 minutes away in Franklinton.
“We had no idea there were other families close to us. Tim asked me if he could give Anna’s mother, Toyua, my phone number,” remembers Kelsey. Soon Toyua was texting Kelsey. The two formed an instant connection, and within a week—on September 22—they got together and had lunch outdoors in Amite.
“They are the sweetest people I’ve ever met in my entire life. Toyua’s the one person I can go to for anything Rett-related or mom-related. She’s been through it all. She has five kids and she rocks it!” shares Kelsey.
“I gave her some numbers to call to get on the Children’s Choice Waiver List,” remembers Toyua. “It’s for special needs families in Louisiana. It paid for us to retrofit our bathroom. Anna has designated money each year that she can use for anything that will help her in our home—a babysitter, a nurse, a ramp. Whatever we need.” Rett children automatically get Louisiana Medicaid, but there are things they need that insurance doesn’t pay for, and those expenses can add up quickly.
Available resources vary greatly by state, and often doctors aren’t familiar with where to point newly diagnosed families. That’s one reason why connecting to other Rett families is so critical. They’re a little further on the journey and can put some ease and direction in the process.
“I had no idea what a waiver was until she told me. It’s like a secret club, and you never know about it until someone tells you,” Kelsey shares. Now the new friends get together every couple of weeks, sometimes at Toyua’s home. Charlee has even ventured out on Anna’s adaptable bike. “Normally, Charlee doesn’t like anything that confines her but she loved the bike!” shares Kelsey.
It’s been a wonderful adventure for both families. “Having Toyua so close is amazing. I love being able to spend time with her and her babies.” Instead of feeling like she’s facing Rett alone, now Kelsey feels supported and hopeful about Charlee’s future.
“Even with the big, bad Rett monster, we found the good. We couldn’t have connected with a better family. She’s [Toyua] so kind and positive and has such a great outlook on everything.”
If you’d like to connect with families in your area or need to find state-specific resources, please reach out to your state family empowerment representative or Samantha Brant, our family and community engagement manager.