Two-year-old JULIA, Hope4Harper CDKL 5 Friend for August
The following is written by Julia’s Mama:
When I start talking about my Julia, I sense how my emotions are beginning to run very strong. I just need to get up and get going and hold on to HOPE.
“Julia Started Having Seizures and the Nightmare Began”
Life couldn’t have been better. A little darling I always dreamed of arrived in our lives. What a wonderful and unexpected gift. Julia was born on June 22, 2010. Three weeks later life as we knew, it would never be the same. Julia started having seizures and the nightmare began: countless visits to hospitals and emergency rooms; doctors, nurses, and specialists invaded our lives and we were constantly in a confused state of mind. What is happening to her? And why? When the doctors told us it could be epilepsy, concern grew. Little did we know there was much worse news to come. The genetic test results came…
“cruel, brutal, and unreal. CDKL5.”
…and we started to grieve for the little girl we would never have. Julia may never walk or talk and many complications put her life in danger every day. Even in our worst nightmares, we couldn’t have imagined that our daughter would not be calling us “mama and papa”. Julia is the daughter I’ve always dreamed to have since I can remember. She is a little girl with a strong personality despite having a very rough start in life.”
“I Am So Scared of The Seizures!”
She cannot walk or talk, crawl or sit. She cannot play with toys and cannot use her hands purposely. She hasn’t met any milestones that in a normal situation, a mom would proudly mark the check box. But she is so special to me…
My special daughter is always in my heart. I am so committed to her and her welfare that I literally live and breathe anything that causes her pain, discomfort or sorrow. I am so scared of the seizures! I pray that she will not ever be taken from me. I pray that, until age reduces me to the shadows, I may be to her a strong tower and a reservoir of security, and most of all, the best mother to a little one who is so precious to me. I love my little doll: deep and pure. Every fibre of my being is connected to My Julia.
…Harper, we love you. Thank you for sharing Julia’s story!