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.
Keeping on keeping on
3 weeks ago