Monday, 19 May 2014

Five years ago my mother Sara died unexpectedly of cancer that was diagnosed just three days previously. My sister, Dad and I were with her in hospital when she passed away quietly into the next life.
Yet within a month I became pregnant, finally after years of trying, with our third child, James. It felt like the circle of life was continuing.

Yesterday was the anniversary, so a poignant day, but even more so as the film crew from Live Life Then Give Life ( were at our house filming a mini documentary about James.  I talked on camera about the journey that has taken us from James' diagnosis last July, to being put on the waiting list for a heart transplant last August. It's been a long 9 months wait. I spoke from the heart and I felt emotional, but held it together, and I think we got some good footage. The kids were fantastic and my older two were great on camera. James was a little superstar, and chirpy and worked it for the cameras. My friend Anna took loads of photos which hopefully I will get up on the post later in the week.

What could've been a gloomy and depressing day, became a really positive day, like finally we can really make progress with getting James' story out there, and hopefully changing people's views about organ donation. The Facebook Page has 2,600 likes since I started it just over 48 hours ago. How amazing is that?

Thank you for anyone reading this post and please keep sharing the love.


Saturday, 17 May 2014

All about James

Hello, my name is James Lewis. I am 4 years old. I have been waiting for a heart transplant for 9 months. I have a heart condition called restrictive cardiomyopathy, which means that my heart does not work properly anymore. My Mummy, Kate is going to tell my story.

In July 2013, out of the blue, we had the shocking news no parent ever wants to hear. Our youngest son James was diagnosed with restrictive cardiomyopathy and at best might live for another two years or so.  The only option would be a heart transplant. I said to the consultant, how can I pray for a new heart for James when someone else has to lose a child?

We went to meet the transplant team at Great Ormond Street Children's Hospital, and soon learnt that even with a successful heart transplant, James' journey would likely be shorter than you would hope, that the average life expectancy is 15-20 years. But we decided that life is for living, and that James could have a remarkable, if shorter life.

I decided at that point that I wanted to make something positive happen out of a very scary and unpredictable situation. It became apparent that there is a massive shortage of child donors, and I want to raise awareness about this.

  • In 2012, 48% of parents asked to donate their child's organs said no.
  • 97% people would take an organ if they needed one, yet only around a third of people are signed up to the organ donor register.

Many parents do not realise that they can sign their children up to the organ donor register.
Children are very receptive to the idea of organ donation. They see it as recycling. For parents who bravely say yes, in a terrible, traumatic situation of losing their child, they have the knowledge that their child has not died in vain.

One person's donated organs can save the lives of 7 others, and transform the lives of another 2 people.

I have been working with a charity called Live Life Then Give Life to raise awareness about organ donation, particularly in children. The work we are doing is part of the Let Love Live On campaign. Every child is part of a family, organ donation affects everyone.