25 Sep
  • By Heike
  • Cause in

“How to Stop a Thief”

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It’s been with us a while now, this thief called CDKL5.  It’s been robbing our daughter Mia since she turned 51 days old.  She is now 5.  It lives with us and it does not leave. It takes and it takes and never stops.  It is relentless.

One can never be prepared for this type of thief. It takes your baby girl from you, it takes your dreams you had for her, for yourself and for your family.  You see the life you dreamed for her lying dead on a hospital floor.  It steals everything you have so many times you don’t think it can continue.  But this thief shows up again and again.  It sits with you at your dinner table and follows you to bed at night. It’s back in the morning and never misses a day.  You are sure it will go – it has to, but it doesn’t take long for you to learn that it will never leave. Picturing it with you forever is almost unbearable, so you don’t think about it.  You live with the physical presence of the child you dreamed of but that is it.  You search for ways not to lose your mind and pray for strength so you won’t.    Every day the thief is there taking and taking and a piece of your life remains permanently in mourning.  How do you do it?  Everyone wants to know.  How do you live with a thief?

It is almost impossible. You must become stronger than this relentless beast. Expectations are not only lowered they are just gone. You develop a new sense of resilience and it is exhausting.  You have no choice. There is no way to live with a thief and you know the thief has to be stopped.

The thief has a flaw however, and that is it cannot take one’s spirit.  Like all moms and dads my spirit still holds the dreams I have for my daughter.  It is renewed every time she gives an endless cuddle and speaks to me through her eyes.  The love for this helpless child keeps us strong, still believing in the advancement of science.  In the limitless capabilities of technology today lies the answer. We will cast the widest net and live with the belief that everyone that crosses our path has knowledge to offer.  We will always fight back for our child and so many others.

We can stop this thief known as CDKL5.

Imagine everyone together.

It can be done.

Together we are stronger.

Cure CDKL5.

Heike