Emma’s blog, part 3: watching your child live life to the full

Mum Emma she explains how her teenage son Lewis’s disability hasn’t stopped his determination to set up a charity so no child faces childhood illness alone.

Lewis and Emma

Published: 23/10/2020

Lewis’s life is a constant balance between life at home and in hospital; when he was 14, he really started to struggle with the feelings of isolation caused by the time he’d spent away from school.

When he came up with the idea of Friend Finder I was in awe of him. He put so much time and energy into the planning. His daily seizures and headaches would make most people feel sorry for themselves, but Lewis fought against all that and was constantly pushing forward to help more and more disabled children like him, so that they too could make friends and not experience the feelings of loneliness that he’d grown so use to.

There is so much that Lewis can’t do, but he still founded a national charity because he wasn’t afraid to ask for help. A lot of people find asking for help a sign of weakness or defeat, but in fact it’s a sign of strength.

Lewis began to learn so much, and because he knows he has the memory of a goldfish, he asked me to document and take photographs of everything he was doing to help him remember.

When Lewis won the Radio 1 Teen Hero of the Year Award, I was so proud I thought my heart was going to burst.

We see Lewis fight every day to do the most basic things, like getting up in the morning and getting dressed; so to see what he has achieved over the past years makes us very emotional.

The fact he’s helped so many people at such a young age is amazing, but if they could see the reality of his daily life they’d realise that he is a true superhero. That’s why I was so proud when he was asked to write this book; it’s a chance for him to finally tell his inspiring story.

I have learned so much from Lewis’s humility and kindness towards people. His passion and drive inspire me when I’m feeling down. His fighting mentality and determination never to give up keep me going every single day.

His disability gave him the ability to understand and help others, and it gave me the challenge of raising a family that sticks together through good times and bad: a family that faces adversity as a unit of strong human beings, helping others and living each day as if it were our last.

Lewis may need a mechanical pump in his brain to keep him alive, require my constant supervision and have a massive impact on everything I can or can’t do, but when you’ve grown a real-life superhero in your tummy, you can’t help but watch in amazement and enjoy it with a massive smile on your face.

I am so proud to be Lewis’s mum! Lewis was born to be different, not because of his illness or disability, but because of his big heart and passionate vision to make the world a better place.

Emma’s blog is taken from her son Lewis’s book Looking at the stars. Lewis’s charity and campaign is Friend Finder, helping chronically ill and disabled children have fun and make friends. Lewis is now 17 years old – he has been in and out of hospital since he was diagnosed with a brain tumour at 17 months old. You can read part 1 and part 2 of Emma's blog.