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 www.lltgl.org 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.