Here is a letter I received from Ceri's mum Julie - I'm sure she wond mind me posting this here:
I have to thank you so much for sending me the link. The similarities in our stories is in a strange way comforting.
So many many times I have had to swallow the awful fact that I didnt tell her she was dying...nobody did...including the doctors. It wasnt until our local Priest came and visited her (poor guy was so shocked and out of his depth) and spent some time with her that anyone had mentioned it.
He asked her if she was afraid or angry and she said no...but she just didnt understand why?
Her last week at home was full of the most amazing things. She had had a huge seizure (due to massive 'catastrophic is what it said on the CT report metastasis in her brain). She lost her speech but after spending a day in hospital, we decided to bring her home and Hospice came to our rescue.
She lived a week at home and died oh so peacefully on Sunday evening 14 January.
In your journal you write about waiting for her healthy heart to stop beating....I will never forget how her heart and lungs worked desperately to keep her alive..never!!!
Then I watched the video of Katies story and the music you played was Evanescence....I have a video of Ceri singing I Immortal..its on Youtube...if you want to see her singing - just type in Ceri Elizabeth Smith into videos..it comes up along with another of her singing Think of Me with my quartet and chorus - these were shot before we knew anythinga bout her illness.
Ceri's disease took 13 months from diagnosis to passing on. 13 months to take a beautiful healthy vibrant amazing child away from us.
We have raised $75,000 over the past 3 years to fund awareness in our community. We will never stop this campaign!
Now, my sister has been diagnosed with stage 1 A, her daughter with a moderately atypical mole and her son with a mildly atypical mole! So the nightmare continues.
Much love and thank you for the link to the website...I will be visiting again.
Julie
