It all started with a green dress, wings and a beautiful headdress. A simple idea, inspired by a little girl named Amber, who was five years old at the time. While on holiday at Disney World, Amber’s mother, Carol-Anne, spotted a little green dress in the window of a shop and purchased it for Amber. The color green holds significant meaning to Amber and Carol-Anne, as it is the color that represents an important community of people with a rare genetic epilepsy called CDKL5 deficiency disorder (CDD). Amber has lived with this disorder since the age of four and, now 17, she continues to have seizures, significant development delays and requires around the clock care.
“We, like many rare disease families, felt alone when we first received the diagnosis,” recalls Carol-Anne. At that time, 13 years ago, little was known about CDD and the online network of families was small. However, that feeling of isolation changed when Carol-Anne began researching the disorder and eventually met another mother whose daughter had CDD. During their first meeting, Carol-Anne brought the little green dress and gave it to her newfound ally as a tangible way to feel connected to one another. From then on, Carol-Anne knew she had to turn pain into purpose and set out to help others find the same sense of community.
“The dress began its journey in the UK in 2011 with Amber before traveling to Denmark,” says Carol-Anne. “Eventually, that family passed the dress along to another CDD family, and this continued with each family taking a picture of their child wearing the dress before placing it back in the box to pass on to the next family.” This blossomed into what is known today as the Little Green Dress Project.
Along the way, a notebook was added to the box so families could include heartfelt notes to be shared from one family to the next. This has since grown into three notebooks filled with personal stories, inspiring poems and memories that each family has cherished. “It provides an opportunity for families to connect with others who understand what it’s like to have a child living with CDD,” describes Carol-Anne. “It also allows families to find comfort and strength in knowing they aren’t alone.”
Eventually more items were added to the box—small gifts, a teddy bear, a green bowtie. The box has been shipped all over the world and has reached 90 families, 23 states and four countries—the United Kingdom, United States, Denmark and Canada. Today, there are still 120 CDD families eagerly awaiting their opportunity to contribute to this special box.
“Amber is a trailblazer who likes to bring awareness through the color of green,” says Carol-Anne. “In May 2012, she was chosen to be the official flower girl at her towns visit by Her Majesty the Queen and Prince Philip. The Queen was ‘delighted that she is now up on her feet’, Amber having taken her first independent steps nearly aged seven, just two weeks before this visit.”
Amber and Carol-Anne never imaged that a little green dress could help so many families feel connected all over the world. “If only that dress could speak and tell the tales of all the families it has brought joy, and all the families that have felt that sense of community and connection throughout the past eleven years,” she says. “It’s stories like this that remind us of the true power of this community. Stories that show us that you don’t have to be together physically to be together emotionally, but that you can certainly continue to touch lives.”
Amber’s legacy continues to touch lives, even today, 11 years after it started. Thank you, Amber, Carol-Anne and the CDD community for sharing a little piece of your life with others.
Learn more about the Little Green Dress Project and the CDKL5 Alliance, an international advocacy organization that Carol-Anne went on to cofound.