Julia's story

When I start talking about my Julia, I can feel my emotions become very powerful. And this is overwhelming. I just need to get up and get going and hold on to HOPE.
Julia's story is one of spirit and hope.

June 22, 2010. Life couldn't have been better. A little darling that I have always dreamed of arrived in our lives. What a wonderful and unexpected gift. Just three weeks later, life as we knew it would never be the same. Julia began to have unexplained 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. A rare genetic disorder affecting mostly girls from birth. It was devastating...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 never 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.

She cannot walk or talk, crawl or sit. She cannot play with toys and cannot use her hands purposely. She hasn't met any of the milestones that in a normal situation, a mom would proudly mark off the list. Regardless of this, she is still so special to me...

CDKL5

CDKL5 is a gene that provides instructions for making a protein called cyclin-dependent kinase-like 5 also known as serine/threonine kinase 9(STK9) that is essential for normal brain development. Although little is known about the protein's function, it may play a role in regulating the activity of other genes.

Meet Julia

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.

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 special.

I love my little doll: deep and pure. Every fibre of my being is connected to My Julia.

Anchor 1

When I start talking about my Julia, I can feel my emotions become very powerful. And this is overwhelming. I just need to get up and get going and hold on to HOPE. Julia's story is one of spirit and hope.

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.

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 special.

I love my little doll: deep and pure. Every fibre of my being is connected to My Julia.

When I start talking about my Julia, I can feel my emotions become very powerful. And this is overwhelming. I just need to get up and get going and hold on to HOPE.
Julia's story is one of spirit and hope.