There is a little green dress making its way around the world, bringing words of understanding, wisdom and support to the families of children diagnosed with a condition called CDKL5, and it recently made a couple of stops in the Greater Cincinnati area.
Four-year-old Catie Castellini was diagnosed with cyclin-dependent kinase-like 5 (CDKL5) a few days before she turned 2. It is an extremely rare genetic disorder that can result in neuro-developmental impairments. Most patients with the diagnosis have significant seizure activity, but Catie is lucky, she no longer has seizures.
Only about 600 children have been diagnosed worldwide with CDKL5, but Catie’s mom, Amy, believes there are many more kids who have the disorder but are undiagnosed or have been misdiagnosed.
Due to the rarity of CDKL5, very little research is currently underway to help understand the disorder or investigate treatments. The Castellini family and hundreds of other families around the world are working to raise awareness of the disorder in hopes that families struggling for answers will find them and those diagnosed will soon find a cure.
The green dress project helps raise awareness by giving the families opportunities to talk about their children and their experiences, but it also brings with it some encouragement and a sense of community to families, often very far away, who are walking similar paths.
From the International Foundation for CDKL5 Research website:
“The dress left Somerset, England in the summer of 2011 and is currently working its way across the globe. The dress travels with a card each for our girls and boys (that’s right…even boys can enjoy this project!). On its way to its next adventure, the dress and its box contents include a personal card from the last recipient to the next with a message of hope and love with a small gift. A photograph is then taken of the child and the dress and placed in the box to start its journey onwards again. Its final destination back to Somerset will reveal a bounty of beautiful pictures of our angels united by the Little Green Dress…”
Amy says that after hours upon hours of therapy, Catie has recently learned to sit on her own. This is huge for Catie and a significant help to Amy as she cares for her growing daughter. It is a long road, but the Castellini family remains hopeful that, through research, treatment options will become available. And in the meantime, they love Catie with everything they have and celebrate her hard work and many accomplishments.
Just before Catie’s time with the dress, it made a stop with her friend Charlie who also lives in the Greater-Cincinnati area. And on May 31st, the Castellini’s sent the little green dress along to the next family, after adding a photo of Catie in the dress and encouraging words for the family on the receiving end. It’s a global effort to connect families that often feel alone in their medical journeys.
The Castellini family was also recently featured in a Medical Edge segment with Channel 12’s Liz Bonis if you’d like to learn more about their story and their efforts to raise awareness. You can also get involved in efforts to help find a cure.