A Letter To IP (the Genetic Disorder That Took My Daughter's Life)

I knew nothing of you all my life. Hidden within me, your darkness lurked, so cunningly concealed behind a pretty package. No warning, no sign to let me know. You tricked me. You spared me the physical scars, yet you gave me the most pain that could ever be felt. You gave me nothing, yet took my all, my everything.

I will never forgive you for the loss, the suffering you caused me and so many others. The parents who must go on without their sweet, unborn baby boys. The girls who are robbed of their full potential because of the seizures and the CNS issues you inflict. All the beautiful and brave little girls and women who carry your physical scars, wear them every day, robbed of their confidence and self-worth in this cruel and superficial world. If you were a person, we could bargain. I would offer to wear all these scars in return for all you took from me, if you could give me back all I have lost. I would bargain, plead and beg.  I would do anything.

My beautiful, innocent baby girl. So perfect, so sweet, so brave. Barely born, barely opened her eyes. With everything to live for. So wanted so loved, so much hope. You gave her no chance to fight you.  Your force so strong, so powerful. Your seizures so unstoppable. You took her from me, ripped from my arms, from my life, from my family. We will never be the same, our life forever changed.

As I look in the mirror, I see a mother without her child. I see pain. I see me. I see you. I gave you life. You were born with me, when I was born a random 1 in 700,000 genetic mutation was also born. If you were a limb I could cut you out. Instead you are in every fibre of my body. Well, I hate you with every fibre of my being. I hate that I must live with you but I will learn to do so.

You messed with the wrong mother. You picked the wrong child to take. I will make sure you never cause more suffering in my family ever again. I will never be able to conceive naturally (you took this from me too). I will do all I can with the help of modern medicine to have a healthy IP free child, so you will be forever extinguished from our lives. My Amelie’s short life was not in vain, oh no. Already a medical team has been assigned to her case which in turn is fuelling more research into learning about you and your evil ways. My hope is, with science, amazing researchers and my daughters help, you will one day be totally extinguished from everyone’s lives. Gone for good. No more pain. No more suffering. I have hope. For now I am done with you. This stops here.