A Letter from our Chair of Trustees

Childhood Cancer Awareness Month

In January 2017 our beautiful, determined and then youngest niece, Vala-Mist, was born. Normally a happy and carefree time, sadly we knew from the start that she had a fight ahead of her that none of us were really prepared for.

When my sister-in-law was 7 months pregnant she learnt that there were some complications. It was stressful time but one we hoped would be short and that would soon all be ok. Born early at 37 weeks and 2 days, and flown from her native Iceland to Sweden less than a week later, this little girl, our beautiful niece, needed the best care possible to help her achieve what so many of us take for granted.

A chance at life.

16 operations, countless flights being blue-lighted to hospital, and 22 months later Vala-Mist sadly lost her fight for life.

In the months that followed it transpired just how much of a miracle she was.

With two genetic conditions compromising the health of her heart and brain from day one, and so many compilations caused through the numerous operations, traumas and barriers she faced in her recovery, including infections and development delays, it was only she after passed I realised just how hard and special her fight was.

The fact we got 22months with her was frankly astounding. She will always be our miracle niece. We were blessed to have Vala-Mist in our lives and have the time with her that we did, and despite the immense sadness of losing her, I know we all have a piece of Vala-Mist in our hearts and carry her determination with us.

For our whole family it was a difficult period.

But there are lessons in her fight for life and undetermined spirit. The youngest of four cousins, she refused to be left out and had a hunger for trying things, no matter how hard it was for her. With three nieces added to the family since, and seven nieces and nephew in total, I love them all equally, but her fight and zest for life will always hold a special place in my heart.

For me personally, Vala-Mist’s fight, our loss, her sibling’s trauma, galvanized my opinion that no family should have to go through this if it is avoidable.

And given the advances in cancer research in recent years, I personally feel that any child dying of cancer, one day, should be avoidable.

The issue is funding…

Despite being the biggest cause of death for children under the age of 15 in the UK, the funding to childhood cancers is pitifully low.

This is understandable, to an extent, as the incidence of childhood cancer is significantly lower than adult cancers and childhood cancer isn’t just one disease it is hundreds of different types and variants all with their own unique pathways and effects.

But every child’s life is important, and every child deserves a fighting chance at surviving childhood cancer, regardless of the costs.

If we could have saved Vala-Mist and have her with us today as the vibrant, loving and curious 5yrs old I know she would be, I’d give anything to make that a reality. I’m sure many of you reading this, especially those who have lost family members in similar ways, feel the same.

Vala-Mist didn’t have a fair chance at survival. The odds we stacked against her from the beginning as her condition was incredibly rare and there is no cure.

This doesn’t have to be so for other families.

Which is we have launched The Childhood Cancer Charity, to fight for funding specifically to understand the cause of childhood cancer, to fund how to prevent it, to fund training for the medical community to be more aware when cancer symptoms present themselves and take immediate action, and to work with those funding research into treatment and cures, collaborating and together creating a world free from childhood cancer.

Our short term aim is to help as many children and families as possible to survive childhood cancer and go on to realize their hopes and dreams.

Our long-term goal is that one day, no child is diagnosed with cancer.

This Childhood Cancer Awareness Month we encourage you to join our cause and fight alongside us to make this our goal a reality.

Share your story with us and be an Ambassador of our cause. Take part in our #oneday fundraising event as a Childhood Cancer Charity #Champion. Or volunteer your time as a local Advocate, to help make our dream a reality. 

Thank you,


 

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Childhood Cancer Charity

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