When Melissa Moore’s daughter, Ashley, was diagnosed with CDKL5 in the summer of 2009 at the age of seven, their lives didn’t really change much. The genetic counselor gave her a piece of paper with CDKL5 written on it and told her to Google it along with Rett Syndrome, a better-known disorder. Melissa’s searching into CDKL5 brought no results and she put the paper in a drawer. “Ashley was seven and I had already accepted this life so having a diagnosis didn’t really change anything, especially since there wasn’t any information about it,” Melissa remembers.
About a year later, she found herself thinking about the diagnosis again. She dug out the paper to search and see if new information was available. This time she discovered a Yahoo group of CDKL5 parents. Shortly thereafter a Facebook group was formed called “CDKL5 Parents Support Group” and Melissa joined as one of the first members. “There were so few of us in the beginning,” she says. “I’ve made so many friends in the group. Even if we haven’t met in person, they are still great friendships.”
“I’m grateful for the friends I’ve made.”
With a diagnosis of CDKL5 Deficiency Disorder now often occurring in infancy, families today luckily don’t have the same experience struggling for information and support as Melissa. The International Foundation for CDKL5 Research (IFCR) has a comprehensive Resource Library of helpful information on their website at www.CDKL5.com. They also offer 1:1 support from trained “Family Support Representatives” who are available to be an empathetic listening ear for families at any stage of their CDKL5 journey.
Additionally, the CDKL5 Parent Support Group on Facebook is as active as ever with over 1,400 members. Parents utilize this group as a place to ask questions and troubleshoot the challenges that come with a CDKL5 diagnosis. Melissa has been a moderator of this Facebook group for eight years. “I didn’t want to (be a moderator) initially,” Melissa says laughingly. “I wasn’t sure I’d have the time, but since I started doing it in 2014, I’ve found that I really enjoy helping the community in that way.” As a natural giver, Melissa seems perfect for the role.
“Melissa is about as genuine a person as you will come across. She cares so much about our kids, and she encourages parents to take control of their child’s health and speak up for what they want regarding their child’s care,” comments Marissa Bishop, a fellow CDKL5 mom.
When the IFCR hosted its inaugural “Move CDKL5 Forward” event in 2021, Melissa decided to participate, and she did so in a special way. She committed to walking each day in honor of children whose lives have been cut short by CDKL5. “My tribute walks were usually four miles long, give or take, and I ended the month with a longer, 10-mile walk. I walked around my neighborhood or on the local track while listening to music.” she said.
“There were some days that I didn’t want to walk because it was so hot, but knowing I was walking for these precious kids pushed me to do it.”
In total, Melissa walked 146 miles (and biked 15) in memory of 51 special souls that she is personally aware have passed from CDKL5 Deficiency Disorder. “It gave me joy to walk for them, to share their photos, and to honor and remember all these beautiful kids,” she says.
This year, Melissa is doing her tribute walks once again, but unfortunately, she has added new names to her list. The tributes are personal for her.
“My heart breaks every time a child with CDKL5 passes away. I know that at any given moment that could be my baby and it breaks my heart to think that people might forget about her, so I do my best to remember all the kids who have passed away,” she shares. “These families are always in my thoughts.”
Last year, Melissa wasn’t sure how her fundraising efforts for Move CDKL5 Forward would go, and she was pleasantly surprised. “The donations were amazing! It meant so much to me to see people supporting my walks and interested in my tributes so much that they were following my daily posts! It also felt great to help raise money for CDKL5!” Melissa raised over $2,000 for the IFCR!
Thank you, Melissa, for sharing your story and for being such an amazing support to the CDKL5 community! We look forward to following your tribute walks again this year!
You can support Melissa’s efforts by donating to her fundraising page.