Lily’ story, as told by her mum, Alison
“My grandad retired at 60 and said ‘life begins now’ and he jumped out of an airplane the very next day. And then he said: right I want to give something back. So he joined the local RDA group and he did that every week, sometimes twice a week, for 25 years. He was even presented with a lifetime achievement award from Princess Anne in his home town for his commitment.
He told us about the children he used to help and he said you should think about RDA for Lily, because she was quite wobbly and used to fall over a lot. He died shortly after that. Lily was 3 when we started coming to Patchwork.
It was a perfect pregnancy – it just all went wrong in that last two hours.
She had a pioneering brain cooling treatment to try to halt the damage but unfortunately, she had sustained a significant injury to three parts of the brain when her heart stopped beating. The specialist told us she would be disabled and that 1 in 100 babies could go on to have a normal life. I thought: right, we have a 1% chance. How do we make that 1% chance happen?
It was an intensive start to her life with physio, exercises and sensory stimulation every day. She did start to develop some bad brain pathways when she was younger which meant her legs would go stiff, she would arch her back. The specialist said there’s a chance you can break this pathway.
So we basically wrapped her up in a ball every time she did it. We carried her so her hamstrings were pulling and stretching all the time, and every day I used to lie her on the carpet and do stuff with her hips and her legs and the walking motion. Amazingly, she went on to walk at 15 months.
I used to think: Lily will be what she will be, but we will make her as good as she can be. I used to visualise her walking down the aisle with my husband linking his arm. She has never questioned anything – not the physio – nothing. She just gets on with it. She is just amazing.
I think Patchwork epitomises every little bit of kindness that we have received in her early years. They are so warm, they are like a family for Lily. It is like a bunch of doting grandmothers and grandfathers – we just feel loved here.
People have been so kind, and I just felt so – not lucky – I don’t believe in luck, but grateful, for all of the kindness. I had this innate desire to give something back. That’s when I became a volunteer at RDA. It just feels right to be here, to be a volunteer and carry on my grandad’s legacy.”