Just over a year on from her brain injury, her parents Alexis and Gareth share their story.
Marnie lives with her parents and younger sister in their family home in Surrey, where daily life is full of chaos and fun. Before Marnie’s stroke, there was always plenty of evidence of her crafting to be found in the house, including paper, glitter and paraphernalia all over the kitchen table. Marnie and her sister enjoyed cycling to school every day, taking part in gymnastics and cricket clubs, and attending bible club.
In August 2024, the family were rocked when Marnie experienced a stroke.
The day started much like any other – Marnie was at home with her mum and sister during the summer holidays and had spent the day crafting and making ‘magic potions’ in the garden. Nothing had seemed untoward in the evening, until at 10pm her mum Alexis was alerted that something was wrong.
Alexis remembers: “I was downstairs while the girls were asleep in bed when I heard her screaming. I found her banging her head and legs and vomiting, but she was unconscious.”
Luckily, Alexis had worked as an emergency nurse and knew to immediately put her in the recovery position and call an ambulance.
Alexis tells us: “the ambulance arrived within 17 minutes, shortly followed by the air ambulance. The paramedics performed CPR on Marnie.”
Emergency treatment
Marnie was taken to St. George’s hospital where she arrived around midnight and was taken straight in for a CT scan. Her parents were taken aside to be given the results.
Alexis shares: “as an emergency nurse, I know that if they take you into the relative’s room to give you the news then it’s bad. As soon as they did that, I knew it was bad – they gave us the news it was a haemorrhagic stroke.
“It just threw me completely. I've never seen a child have a stroke before in my nursing career, only adults. I never thought it could be a stroke.” Alexis
The next few days
Once Marnie was stable at St. George's Hospital and they had drained the pressure off the brain, she was transferred to King’s College Hospital Intensive Care Unit (ICU), where she underwent eight hours of surgery to stop the bleeding in the brain.
The effects of her stroke and subsequent brain injury were unclear at this point.
Gareth tells us: “It took her 12 hours to wake up. It was a long day waiting for her to, just, do something. We didn’t know how she was going to be.
“I feel like that was the real the depth of despair, in that emergency room. Because it was almost like we could either lose her, or we had no idea what her future would be. So many thoughts go through your mind, it's totally unbelievable.”
Thankfully, Marnie began to make a good recovery as soon as she started gaining consciousness. She started to make small movements with her left side, and three days after the surgery she said her first words.
Transitioning home
Marnie was in hospital for a month, and throughout that time made steady progress with her recovery. She started rehabilitation in the hospital and learnt to walk again.
She did so well that she was able to return home and to school in September. But it quickly became clear that Marnie and her family needed further support. Marnie was experiencing fatigue, and her parents started to see a deterioration in the skills that she had relearnt in hospital.
“When the crisis ended, the journey didn't end, it was almost like the journey was just beginning.” Gareth
Specialist support
Marnie started a rehabilitation placement with the Community Rehabilitation Service at The Children’s Trust three months after her stroke.
Marnie had a weekly therapy session, first with a physiotherapist and then occupational therapist, at The Children’s Trust national specialist centre in Tadworth, Surrey. The team worked with the family to set her rehabilitation goals, which included getting her left-hand side functioning and helping her manage her fatigue.
Marnie has also set some goals to help her get back to daily living, including dressing herself and doing up buttons, as well as skipping, and cutting with scissors so that she can get back to some of the fun activities she loves.
Gareth tells us: “Marnie loved her trips to Tadworth. It became a routine that she looked forward to – she would have a morning off school and we would listen to music on the way there. Usually while we were waiting for sessions to start, we would read Tim Tron, a book about a child with brain injury, which she loved because she could relate to what was going on.
“She would have her therapy session and then we’d always to go the canteen afterwards and she’d get the chocolate mousse. It became something that she really enjoyed, it was a really positive experience.”
Child-centred approach
“More so than just the therapy itself, I think she felt special that there was this whole place that she could go to that specialised in brain injuries. When we drove in she would always read the sign and say, ‘for children with brain injuries – look it’s on the sign, that’s for me!’ She was almost like claiming the site for herself. It was quite special.”
Alexis tells us: “The therapy at The Children’s Trust has been very much tailored to her goals and needs. The team just know how to deal with children with brain injuries – it's so specialised – having therapists and doctors that deal with brain injuries every day has been fantastic.”
Marnie and her family have approached her rehabilitation with a positive attitude and humour. Gareth shares: “Marnie has a tendency to lock her leg out when she’s walking, so we joke that she’s like a pirate with a peg leg! The team at The Children’s Trust have helped her relearn how to walk down steps properly and bend her knee.”
Getting back to daily life
Marnie has returned to school full time, with support from her parents and teachers.
Gareth tells us: “we weren’t sure if she was going to be able to go back and stay in her year group, but she’s done really well. She can get overwhelmed, so we have put in place adjustments like a quiet corner for her, ear defenders etc. Since her brain injury she has progressed the most in her reading – it’s almost been like her quiet place, her solace.”
Marnie is also working to get back to some of her favourite activities, including cycling to school with her parents.
Gareth shares: “Someone gave us a tandem bicycle, which was so the best thing ever, because it meant Marnie could get back on the bike. She'd be on the back of the tandem with either me or Alexis, and she just loved it! We loved it as well because we’re riding with Marnie again.
“So that's how we get to school now. She can ride a bike by herself again, which is great, but she still loves the tandem so much. It also turns heads around town which Marnie loves!
“We're just over the one-year mark from when it originally happened, and we’re still learning and adjusting. Marnie has been amazing – the way she has just gotten on with things, but she is also still coming to term with what’s happened even though she can’t always articulate it.
“I think she's probably the most resilient person I know. She's a real inspiration.” Gareth
