She can't walk... but she can swim!
Tell and Sell Stories shared this incredible story about Evie who can't walk, but she can swim! We spoke to her mum Michelle Carr about Evie's diagnosis - brain damage caused by cytomegalovirus, and how she first took to the water, and got her story published in Woman's Own magazine.
To look at my daughter Evie swimming, you’d think she was just like any other child her age. In fact, she has brain damage and it’s unlikely she will ever walk, but water gives her a whole new lease of life. So now I’m doing what I can to ensure this continues.
I gazed at the pregnancy tests on the shelf, wondering which one to buy. I don’t suppose it matters, I thought.
My husband Jonathan and I had been trying for a baby for a year. But after two cycles of Clomid had failed, I wasn’t feeling too hopeful.
I already had a son, Daniel, 11, from a previous relationship, and Jonathan had two daughters, Caitlin, 18, and Shannon, 21, but I dreamt of having a child of our own too.
Once I’d left the pharmacy, I went to my mum Cheryl’s house and nipped to the loo.
Minutes later, I walked out of the bathroom in shock. ‘It’s positive,’ I told Mum, holding the stick.
‘What?’ Mum cried. ‘That’s amazing news!’
Jonathan was working abroad so I texted him a photo of the test and wrote: Do you think this is a blue line?
I’m so excited! he replied
When Jonathan got home, we chatted excitedly about our baby and I began stocking up on the essentials, such as nappies and babygrows.
At our 12-week scan, I smiled as a grainy image appeared on the screen. It was a relief to see and hear the heartbeat.
But it wasn’t all plain sailing. I was experiencing awful morning sickness and I was absolutely exhausted. Then at 24 weeks, I got a nasty cold.
‘It’s completely normal,’ my midwife told me, explaining that pregnancy suppressed the body’s immune system.
I couldn’t complain though, I was just happy to be expecting.
In time, I gave birth to a beautiful baby girl and as I cradled her in my arms, I was overcome with emotion. She was perfect.
We decided to name her Evie and after we’d brought her home, we received a routine visit from the midwife. When she checked Evie over, she seemed concerned.
‘Is something wrong?’ I asked, worried.
The midwife explained that Evie’s head was a lot smaller than it should be and referred us to hospital.
‘I’m sure it’s nothing to worry about,’ she said.
But while we waited for the day of our appointment to arrive, Evie started crying all the time and didn’t want to feed.
When we finally saw the doctor he said it looked like colic, sending us home with drops.
But over the next four months, Evie lost weight because she wouldn’t eat and her head was still underdeveloped. Not only that, but her little body was as stiff as a board.
‘Something’s not right,’ I told Jonathan.
I demanded a second opinion and Evie was sent for an MRI scan and blood tests. Next day, Jonathan and I went to the hospital for the results.
‘Evie has brain damage caused by Cytomegalovirus, also called CMV,’ the doctor said.
The words whirled around my head - had I really just heard that right?
We discovered the virus was often asymptomatic – it showed no signs or symptoms. The doctor explained that it might have been triggered by the bad cold I’d suffered during my pregnancy.
And there was more bad news – the doctor explained that if I’d had treatment at an early stage the damage might have been prevented or reduced, but now it was too late.
‘There is no cure,’ she said.
My whole world crumbled before me as we were told Evie’s condition was a rare brain migration disorder called Pachygyria. She’d developed cerebral palsy and epilepsy, her muscles were very stiff, and it was unlikely she would ever walk or talk.
The doctor recommended physiotherapy, then said: ‘You could try hydrotherapy too.’
We learnt hydrotherapy was a water-based physiotherapy that could help increase motor co-ordination, maintain and increase range of movement and flexibility and increase muscle strength. The warm water could also act as pain relief from muscle spasms.
Unfortunately, it wasn’t available on the NHS. So when Evie was six months old we started looking for a swimming pool that could cater for her needs.
We came across a special program called Water Babies and spoke to our local leader, Marie. We told her about Evie’s medical issues and she assured us that the course would be perfect for her. So we paid £140 for six hours of therapy.
Straightaway, I had a good feeling about it. Evie had always loved water – she really enjoyed having baths and showers at home.
But a few weeks later, when Jonathan and I went along to Evie’s first swimming lesson at Portland College Hydrotherapy Pool, I couldn’t help feeling nervous.
I wasn’t just unsure about how Evie would take to the water, but I was also anxious about how others would react to her and her disabilities.
I dressed Evie in her little pink happy nappy swimming costume and she wriggled excitedly as we watched the previous class in the pool.
Then it our turn. As I slipped into the warm water, her little body relaxed in my arms. Suddenly, a big smile appeared on her face. ‘Is that nice?’ I asked her, as she kicked her legs.
For the first time, her muscles were no longer stiff and she could move her arms and legs purposefully and freely. Jonathan and I could see the relief in her face – it was magical.
‘She’s like our little mermaid,’ I beamed.
My initial nerves quickly disappeared, especially with the other parents being so understanding.
As the weeks and lessons went on, Evie’s confidence in the water grew as well as her strength - not only in the water but out of the water too.
She started to vocalise more - the exercise in the water strengthened her lungs and she began making new sounds. She could also prop herself up on her arms whilst laying on her tummy, and I knew it was a direct link to the swimming board work we’d been doing in the pool.
We weren’t the only ones who noticed her progress - our physiotherapist noticed the difference too. Evie’s muscles were gaining strength and quickly.
When Evie was 18 months old, it was time for her first unsupported solo swim. I watched each child swim towards their mums, then it was our go.
With my heart pounding, I let go of Evie and watched her paddle her little arms and legs as fast as she could as she swam towards me.
I couldn’t believe it - our little girl who could not sit up, crawl or walk, could swim. I was overcome with emotion as all the other mums around me cheered.
‘Well done Evie,’ I cried, giving her a cuddle.
Now she is two years old and though she still can’t sit up or crawl, she swims every week and continues to make great progress.
I truly believe that if it wasn’t for Water Babies, Evie would have had to have a lot more medical interventions to help control her cerebral palsy and spasms.
Unfortunately, we can’t afford to keep paying for Evie’s lessons and when she’s three, she won’t be allowed to use the special pool anymore. So we’re raising money for a hydrotherapy pool for Evie to use at home.
We’ve got a long way to go, but when we have the pool up and ready, we’d love for other children in our community like Evie to use it too. We have seen such a great improvement in our daughter that we want other children less fortunate who can’t afford the lessons to benefit in the same way.