When Michele’s daughter, Alannah, was diagnosed with CDK13, life took on a new path filled with both challenges and discoveries. CDK13 is an extremely rare genetic condition with only about 300 known cases worldwide, meaning there’s little research or established support for families navigating it.
“For Alannah, it affects her motor planning and coordination,” Michele explains. “It also affects her speech and eating.”
Alannah is non-verbal and communicates using AAC technology and sign language. She has also undergone surgery on seven of her ten fingers. “Since she was a toddler, one finger has always been triggered,” Michele shares, “so she hasn’t really had the use of all her fingers.”
Despite those physical challenges, Michele describes her daughter with a smile: “She’s super fun. She understands humour really well.”
With few in-person supports available, Michele found strength and connection in online communities like FRIENDS, a local group with in-person events and meet-ups. “That community has been huge for us,” she says. “It’s given me the chance to connect with other parents, and it’s created events where children of all abilities can experience community too.” Michele and Alannah take every opportunity to participate in events that help raise awareness of rare genetic conditions and funds to provide programs and resources for those with special needs.
Before discovering Guided Hands®, Alannah enjoyed finger painting but struggled to hold a brush or crayon with enough strength or control. “Even playing with Play-Doh is hard,” Michele says. “Anything that requires strength has its challenges.”
New possibilities opened when her occupational therapist introduced Guided Hands®
during a therapy session. Michele saw the difference immediately. “Alannah was able to complete activities with so much more control.”
After following ImaginAble Solutions on Instagram, Michele entered the EquipMeOT Guided Hands Giveaway this past summer, where Alannah became one of the winners. With her very own Guided Hands® and Adaptations Kit, Alannah has been exploring creativity in new ways, from painting with a paint brush to using pencils and markers with more control. Michele says, “Alannah is able to cover more surface area with Guided Hands®. It’s wonderful to see.”
“What’s been most beneficial,” Michele reflects, “is that Guided Hands helps Alannah use tools she otherwise couldn’t. It lets her hold onto art and writing utensils longer. It’s given her the ability to experience creativity and communication in her own way.”
You can follow Michele and Alannah’s journey on Instagram @alannah_do.
