BY AMY MORRISSEY

Alone. Scared. Unsupported. Uneducated. These are only some of the emotions I felt over the 9 years my medically involved daughter went without a true diagnosis. I sought out support groups and while I met some strong parents, I never met anyone whose child had the same needs that Lexi had. While we understood raising a child with special needs, we were unable to connect completely as our children were so different. Lexi seemed so much more involved than any other child I met, so I convinced myself it didn’t matter and that I could cope by myself.

When Lexi was 9 years old, an amazing neurologist came into our lives and stayed with us through the end. Within one month, she gave us what no one had been able to before—a diagnosis. CDKL5 was confirmed in the setting of the PICU when Lexi was very sick and embarking on an enormous life change. Also given to me was the link to cdkl5.com—a website that educated me on this gene mutation. I remember reading it and crying because I felt it was written specifically about Lexi. I knew then that we had finally found our home in the medical world.

Along with the website, I was given the link to a CDKL5 parent support group. Immediately I signed up and was engulfed in support, knowledge and, Yes, even love from strangers who got it. They knew and they understood. Within a week, two semi-local families came to the hospital to meet us and hold our hands through a very trying time. I was completely overwhelmed and grateful to finally have “people.”

When I joined the group we were less then 50, today we have grown to over 1000. I could go anywhere in this world and I would have CDKL5 family that would welcome me with open arms. Others have become my dearest friends even though I haven’t even met some of them in person.

Fast forward two years to when the Little Green Dress Project started. This is a green dress that travels around the world to CDKL5 children. Lexi was doing very poorly and we did not know what the future held. The dress was immediately redirected to her. I will never forget the day the box first arrived. I brought it into the house. I wasn’t even able to open it that day as I was overwhelmed with the power of the package and all who had handled it.

Finally I took the box to a quiet room where I could feel all I was feeling, uncensored. In the box was the dress along with a matching tie and boutonniere for the boys, a gift and card for Lexi from the last family that had it, an envelope with all the pictures of the kids in or with the dress, a journal with the thoughts of everyone’s little green dress experience, and lastly an envelope of cards to Glynn’s family who selflessly donated his body and DNA which ultimately lead to the discovery of the CDKL5 gene mutation.

I remember holding the dress and crying, thinking of all the angels that had worn or touched it. I felt their spirit and strength in the fabric. I found such joy knowing Lexi would be part of something bigger then us. I also prayed that when I placed the dress on her she would feel hugged by the power and love and it would help her through the issues she was dealing with at the time. I read the journal and felt an even a closer connection to the families as they had written down everything I was feeling. We all believed in the power of the dress and that it gained strength with every child that wore or touched it.

Is the power real? No one can be sure. I do know that Lexi turned around and I was blessed with two more years with her. Those years were difficult at times but every day with her brought joy. I am still finding my way without her but find peace in knowing she was part of the Little Green Dress Project and that I have a large extended CDKL5 family that will always be part of my life and heart.