Last night I was honoured to speak at an event at 10 Downing Street about the experience of raising my son James. James has Infantile Batten Disease – a neurological degenerative condition. There is no treatment, and no cure.
James was 22 months old at the time we received the diagnosis – we were told he would not live beyond five years old. To say we were devastated, heartbroken, shocked, or crushed when we received the diagnosis just doesn’t come close.
When you receive such life-changing news, you have two choices – to let Batten disease ruin your family or dust yourselves down and live. We learnt early on that we wouldn’t be beaten and would make each day count, rather than counting the days.
Caring for James is hard – the hardest thing I’ve ever done. He needs 24 hour care and has no mobility. His care is made harder because of the need to navigate our way through the maze of different services – health care, education, social care, equipment – which aren’t joined up. And on a day to day level people’s reactions are tough – it’s hard for people to get their head around a condition that means your child is going to die young. I sometimes have a feeling of complete isolation and exclusion.
Despite this I love every minute I have with James and we do everything we can to make every moment count – for me and Ian, James, Ruby and Isabel. We have so many lovely memories. Which is why it was such an honour to be asked by Together for Short Lives to speak at Downing Street. It was an experience for all of us. James got to wear a policeman’s hat while we posed for photos outside the door of no 10. And we were all so pleased we met the Downing Street cat.
We were more pleased to meet Mrs Cameron in person. I was bent over James suctioning him when Samantha Cameron came into the room, and she came straight over, bent down and chatted to James. It was amazing, and so easy to talk to one another as mothers. She talked to all of us, which was a treat for us all, especially for Ruby and Isabel.
A lasting legacy
But the visit to Downing Street wasn’t just about making memories. There are thousands of other families across the UK with a similar story to us, who are caring for seriously ill children and struggling to get the support they need.
It doesn’t have to be like this. There is some great support for families available from services like the Donna Louise Children’s Hospice, who have been so helpful to us, and Together for Short Lives is here to help ensure the different health, social care and education services join up, so that families don’t have to fight and can focus on spending precious time together.
As a lasting legacy for James we would love to know that other parents who have to go through a similar journey to us will have the support and resources to make their journey the best it can be. We can all work together and help more families like mine to make the most of life – no matter how short it is.
Although I was nervous, as soon as I started to speak I actually felt fine and could tell everyone wanted to hear our story. Chatting afterwards, some of the guests said that they had no idea that we didn’t know about James condition before he was born. They said how tough it must have been coming to terms with James condition when he was nearly two years old. I think it struck a chord with guests who had young children.
A very special adventure
James was a star throughout last night, he was on top form and smiling on cue. The girls were fab too, playing hopscotch on the lovely Downing Street carpets, and rolling around feeling very at home. And then, when we thought it was all over we had a chauffeur driven drive down the Mall, to Trafalgar Square, past Buckingham palace, then back to the Houses of Parliament and Big Ben, just in time to hear it strike 8pm
The night was a very special adventure and we will all have very special memories. Last night when we finally got into bed I couldn’t believe I’d actually done it – I couldn’t stop smiling. We were so proud to be asked.
James is now almost 8 years old (he likes to prove the Doctors wrong) and we know there will come a time when we will say goodbye. We are determined to give him the best of life that we can, and I believe that all seriously ill children are entitled to this opportunity.
Amanda Harrison has been a member of the Together for Short Lives family community for two years. If you want to help us ensure that all families of children with serious illness get the support and resources they need please make a donation now to support our work