On Tuesday, Oli and I went to see a very special couple. Nyila and Zulf live in Coventry, and had agreed to chat to us and to have their story filmed so we can use it for raising awareness.
Fantastic stuff. Of course we have many fab volunteers stepping up to share their story, because they want to raise awareness about their plight. But Nyila and Zulf are different, because their story has already had it's very sad ending.
Their son, Ubaid, developed complications with the digestive system and liver when he was born. He lived in hospital for most of his life, on many treatments including TPN to keep him alive.
They described him in such a passionate way I could imagine him really clearly - his mischevious personality and cheeky smile captured in dozens of photos we went through. They laughed over fond memories - such as the fact that he apparently struggled to hold his milk bottle yet would quite happily wave a 2 litre (empty) coke bottle around!
Nyila and Zulf were told that Ubaid's liver was failing and he was put on the transplant list. They waited and hoped, week after week, staying positive that the call would come. But 8 months later, Ubaid ran out of time. They spoke clearly and passionately about their son, and at times during the interview I was wiping away my tears, trying to remain professional.
I cannot express how much I am in awe of Nyila and Zulf - they are so determined to stop other families going through what they have and are intent on supporting us inspite of their grief. Their story is so moving, it cannot fail to motivate people to think and talk about the subject of organ donation.
It is, of course, a reminder that sadly children need transplants too. Children like William, like Bethany. The concept of organ donation here becomes even more emotionally fraught; could you donate your child's organs? I'd love to hear some opinions about this.
Oli is putting together a video at the moment, featuring Ubaid and Nehal's stories, which I will be using on Saturday when I speak at a dance festival called Kalaalayyam. Who knows how many lives might be saved by these people speaking out about their experiences - without real life stories, Live Life Then Give Life would not be as strong as it is; we need you to help us help others. And as for me personally, I can't think of anything more motivating to remind us why we do what we do.
30 days of me
4 years ago
4 comments:
Very thought provoking. As a transplant recipient, I would like to think I would donate my (theoretical) child's organs but even thought I am not a mum, I can see how terribly hard that would be. Hopefully through your awareness raising, people will make that difficult choice.
good work :)
xx
Hi Emily. Although we haven't spoken for a long time, I always catch up on your blog. As you know I agreed for my daughter Emily's organs to be donated three years ago. It is a very hard decision to have to make but I have never regretted making that decision. Emily has a happy vibrant beautiful and compassionate girl and it gives some measure of comfort to know that at least three people have had their death sentences removed. When people ask me how I could make that decision I tell them that in some way now my daughter and all that she was lives on and that her gift to them means that their families will hopefully not have to live through the terrible times we had to when Emily died. All we have are our memories, but Emily is helping the recipients to create memories for people they love and although they don't know Emily, she will always be in their thoughts. As Emily's mum, she has made me very proud and everything she was and is will remain with me forever.
Keep up the good work. Love Jackie
This is such a hard one, which I've thought about a lot. I know it would be absolutely the right thing to do but, truthfully, I don't know if I would be able to get my head around the idea that my own child wouldn't need their organs any more, in time for those organs to be useful. The timescale is short isn't it? Sue G x
I think this is something that needs a lot of awareness to be raised. If families could bear to think of the unthinkable for a minute and prepare their thoughts and ideas then it would be easier for them if that ever happened to them.
I really struggle with the notion that I am waiting for someone elses child to die in such a tragic and sudden way but there are two children in this hospital at the moment, both of whom desperately need their transplant. At every ward round we are being told by doctors that we are at the end of the road. All options are exhausted. There is a high chance that William will never now be stable enough to go home until he has had his transplant. We were told that only 25 children donate organs on average each year. We were also told that there are about 3 'events' a year that could lead to William's transplant and, of course, he may not be the only child waiting for the same organ on that same day.
My thanks go to Ubaids' lovely parents and to Jacqueline for being brave enough to highlight this on our behalf.
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