Imogin, aged 7
I'm sitting up tonight, waiting for the right time to switch off William's feed and swap if for water, and then to switch off the water. It's going to be a long night and a very early start, leaving at 6 to get to hospital for 7 so he can have a minor operation on his feet. The procedure is minor but poor Wills has been through so much in his life so far and is terrified of 'special sleeps'. He hates the way the gas makes him feel and the sore throat he always wakes up with.
Our children are so brave. I have met a lot of children and families in hospital over the last 5 years. A few years ago we met Imogin and her Mum, Sheila. Imogin had just been diagnosed with Leukaemia and Sheila was in a state of shock and disbelief. We bumped into Sheila and Imogin from time to time when both children were in our local hospital and at a christmas party at out local hospital. I hadn't seen them for a while, but often wondered how Imogin got on. I assumed she'd have been treated and was well again. Over the last 6 months they started appearing in our local paper, appealing for bone marrow donors and then, in January, Sheila was in the paper breaking the heartbreaking news that Imogin had passed away. She was 7. I was planning to write to Sheila via the hospital.
On Saturday, I had arranged to meet with the lovely L for coffee. Shortly before leaving, I read on twitter that there was a street theatre team out in Croydon. Only 1% of those on the organ donor register are from Southern Asia, meaning many have to wait twice as long as white people for a transplant that depends on tissue match, such as kidneys. There is a vibrant campaign on at the moment to address this, using street plays and faith road shows to promote organ donation among the Asian community. You can read more about the campaign, and find out if it's coming near you here . I suggested L and I met to watch the play. It was really entertaining and effective in addressing the myths about organ donation. I think real life stories are incredibly powerful but will be looking to incorporate some of the ideas in talks I plan to do. It was really refreshing to see a different approach to things I've seen and taken part in so far.
L was surprised where the event was taking place as she had heard it was somewhere else in the shopping centre. As we wandered around, we found out why. At the other end was the event she had been told about, a pop up shop raising awareness and registering people to donate bone marrow and enabling people to give blood on the spot. It was being run by aclt, a charity highlighting the lack of bone marrow donors in the Afro-Carribean community. L and I went along and there I saw a familiar face - Sheila was out, just 10 days after burying her daughter, to raise awareness of the lack of bone marrow donors and encourage people to sign up to save the lives of other children. It was lovely to be able to give her a hug and share some memories. She is so strong, a truly amazing and inspirational woman!! She is determined to raise awareness of the fact that children from the Black community have a 1 in 250 000 chance of getting a match from a registered donor should they need a bone marrow transplant. White children have a 1 in 5 chance! What a huge disparity! I promised to do what I can to help them in their campaign.
L and I came away feeling incredibly refreshed and energised from what I'd seen both sets of campaigners do. We are still talking about Sheila and the other amazing people we met in just a couple of short hours.
Now, as I'm preparing myself for another day of procedures with Wills, thinking about how brave he and I will need to be again, I am drawn to a poem Imogin wrote just a month before she died. This, and the image of Imogin above, comes from the aclt website here and the words are written in exactly the same way as Imogin wrote them.
1 comment:
this poem brought tears to my eyes, what a courageous fighter, I often think about my own struggle and feel so fortunate that I was fairly healthy and care free as I child. I'll keep this poem and read it when i'm having a bad day as a reminder of this little girl's strength! Thanks for sharing this story!
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