Tiny beginnings using special things turn into...

massive
moments

Emilies Story

Like most teenagers, my daughter Emilie was a very social, independent girl before an operation to remove a brain tumour caused her brain injury.

For 8 weeks after the operation, Emilie wasn’t aware she was in hospital. When she came round it was devastating to see, she was vegetative. After two days, the only thing she could move were her eyes, though they were crossed. Once she regained full consciousness, she must have known she couldn’t move but there was no way for her to tell us because she couldn’t speak. She couldn’t walk. She could use her arms, but she couldn’t use her hands or fingers at all.

Intensive rehabilitation – tiny massive moments

Emilie was in hospital at King’s for seven months. When she moved to The Children’s Trust, it was to be for a month, but it was extended week by week to three months.

Although lots of things had changed for Emilie, her love of art hadn’t changed, and so the occupational therapist at The Children’s Trust used this to motivate Emilie. When she asked her to roll a snake out of clay and make patterns in it with one fingertip after another, it seemed like a fun arty thing to do. A tiny thing really.

But it was more than that. It was the first step to something massive for Emilie: being able to control her fingers enough again to text her friends, and get back in touch. I’m sure you can imagine what a moment it was for her when she finally got to send that first ‘Hello, it’s me!!’ text to her friends. But it wasn’t just being able to text and snapchat, it was a way back into the world.

Scrapbooking was another thing she loved. Making patterns and pictures and collages out of coloured paper she had to fold and stick with small precise movements. Practicing picking up tiny sequins one by one. Everything designed to help Emilie’s brain create new pathways for reactivating and controlling movement, to replace the pathways damaged by the operation.

To build her core strength and balance, she rode an adapted trike. It was very scary at first. Although the trike can’t turn over, we didn’t know if she would be able to balance. She used a binder round her middle at first, to help her core, but pumping her legs up and down on the pedals seemed to give her balance. It made her legs stronger, and her balance. She’d do it outside, around the grounds. We’d be running behind her. She loved that freedom.

Some of her friends came to see her at The Children’s Trust and I stayed there with her.

Emilie’s life now

Emilie can’t speak now but now she has relearned to use her hands and fingers, she can text her friends. And when she wants to say something she types on her iPad and shows you what she’s typed. It can turn the text into speech but she doesn’t like the iPad’s voice.

Emilie doesn’t walk like she used to. She’s wobblier, she shuffles forward rather than heel/toe, heel/toe. She had to be taught how to walk. She had to be taught how to move safely. It was her core that was weak, more than her legs. But now at home she can walk by herself from her room to the bathroom to the desk to the dining table.

She went back to school a few months ago. First for one lesson in the afternoon, this week she’s doing three lessons then lunch. She was very nervous about going back to school but so far everyone has been very supportive. Emilie was very sociable before this and she’s managing quite well socially. She can text and snapchat with her friends. The physios were reluctant to let her walk into school in case she fell so the condition of going back to school was to go in her chair, with two assistants: one pushes, one carries all the equipment.

Thank you.

We urgently need more special things to help children and teenagers with brain injury get moving again.

Would you like to help us?

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How we make it fun to re-learn gripping, pointing, reaching, balancing, standing, walking...

Jo Harbinson is a physiotherapist at The Children's Trust

“Every child who comes here after brain injury is different. Some may not be able to make any intentional movement, others may be able to still walk or reach, but it’s a wobbly or jerky movement.

“We look for activities they enjoy that we can link their physiotherapy into. So it’s motivating while it’s quietly training their brain to make new pathways to replace the ones that have been damaged. And we make sure everything suits their age.

“We also try to make sure that we have all the mobility equipment we need for different ages and sizes, so everyone can try things out. Without that chance, we could be limiting a child’s mobility for the rest of their life.

“With the right equipment and activities to help us, we can help each child find their full potential.”