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I decided to look up Aplastic Anemia and see if any progress had been made in their success rate. To many this condition is unknown as the incidence of aplastic anaemia is 0.7 – 4.1 cases per million people worldwide.
21 years ago, I lost my beautiful daughter to this rare disorder. I was told that she was a 1 in a million as at that time they had only seen it once before in a child of her age. The odds …50-50
It is not cancer, but serious, as the bone marrow is severely affected and there are very few blood cells left in circulation. Without adequate numbers of blood cells people with aplastic anaemia can become anaemic (low red blood cells) and more susceptible to infections (low white blood cells), and to bleeding and bruising more easily (low platelets).
Needless to say, it was like a fast rewind, as words of immunosuppressant drugs, immune systems, platelets conjured up memories of anxiety, disbelief, hope, happiness, sadness and grief. And of the beautiful baby girl who entered the world and filled our lives with unmeasurable love and joy.
21 years ago, I made the decision to take Laila off the ventilator and let her be. There were some who were angry with me for making that decision, and others accepted more easily. Aidan who was 11 at the time cried as though his heart would break. Mine was breaking but I had to be steadfast.
When Laila was first diagnosed her Doctor said to me that she would do everything in her power to try and make Laila better but if she felt that the time had come to make choices, she would tell me. That morning when I arrived at the hospital and stood next to Laila as she slept, she looked me in the eye and said the time had come. There was nothing more they could do and that it was now unfair to keep putting this child through more pain.
I understood as at Christmas, her presents still at home, I had stood next to her and watched Father Christmas come and wish her. Later she bit me and stared at me, those big eyes bored into my soul with sadness and made my heart ache. I couldn’t hold her just sit next to her and wrap myself around her as best I could.
So, I made my decision and told those close to me and just after 3pm on the 31st December we unhooked the machine and pushed her out of ICU, outside and back into the kid’s cancer ward where she had spent much of those past months. A small oxygen cylinder at her feet with a nose clip which helped her until we got her settled. We took it out and she lay on my lap and just breathed so quietly and slowly until her breath just eased away and all was still. Utter quiet is what I remember surrounded by vases of beautiful flowers, and filtered sunlight pouring through the windows.
Why oh why – I have no idea – and never for one moment did I think I would have to endure something rare and similar again… but I did – and the why oh why just rattles louder in my mind.
It is hard to believe that it is 21 years ago.
I do wonder what my happy child would look like today, as she will be turning 24 on the 9 January. Its all I can do …wonder… and try not to drive myself demented with questions that will never be answered.
I will drive to the hill after work and sit with A, and gaze out beyond and remember.
To the small person who lifted my heart to places I did not believe were possible – who bought joy to her brother and her mother and those that knew her – I give my gratitude.
Laila Vaun Rip
09.01.1995
31.12.1975