Our daughter was chosen to be the first girl at our Rett Clinic to be in a first round trial for a new and potentially symptom changing drug, for Rett Syndrome. When we got the call, we were thrilled and even more thankful to be a part of something that could possibly help her and all of the other kids with Rett.
My emotions have been running wild. The day before my daughter was to start the clinical trial for Rett, I sat reading the potential side effects of the drug. I was nervous. My initial reaction at being in the trial was excitement but as I read, excitement turned to anxiety and fear. All I could think was “Oh my gosh, what are we thinking?!?!” I turned to my husband and to my amazement, he wasn’t phased. His feelings were, “All drugs have to list the bad side effects.” Which is true.
My daughter is 10 years old and her Rett symptoms are mild. So the thought of giving her a drug that could potentially worsen her symptoms, scared me to the core. Progressing Rett at my own doing, truly scared me. At the same time, the drug could make the symptoms she has, actually better. This put the fear of the unknown in me. I had to sit and evaluate what we were about to do. The one thing that calmed me more than anything was being able to discuss everything with her team of doctors. Throughout this process, her medical team has been amazing. They assured me, they wouldn’t give her anything they didn’t feel was safe. Their comfort and love for my daughter and those with Rett Syndrome, put my fears to the back burner. This process reminded me how truly lucky we are.
We are so thankful to be a part of something that could help. Thankful to have a loving, caring and brilliant group of doctors watching over her and fighting for her. This may sound crazy, but we are thankful that this is the time that my daughter has Rett Syndrome, treatments are really close. Changes are coming for our kids. To be a small part of the process, to be able to help move the trial along, feels like an honor and a privilege. A privilege than many didn’t get the opportunity to have.
Don’t get me wrong, its still scary, but scary good.
This article is terrific and so hopeful. Grateful for the wonderful doctors and nurses helping and encouraging this family. We love you, Ellie, Rhys, Heidi and Rob.
All the very best to all our special girls, please how do you get involved in the testing programs
We too have a daughter aged 23 with classical rett syndrome