Hallie-Mae’s story

This is Hallie-Mae, much-loved daughter of Gareth and Charlene, adored little sister to Lexie, 15, and big sister to three-year-old Ivie.

Two years ago, Hallie developed a limp. Investigations into its cause were ongoing and on the 11th of September last year, Hallie walked into hospital for an MRI under general anaesthetic. When she woke up, Hallie was paralysed. When Hallie was discharged, Gareth and Charlene carried their daughter out of the hospital, hoping that she was just taking time to come around from her anaesthetic. But Hallie never regained her ability to walk, and the worried parents had no choice but to bring Hallie’s bed downstairs so they could care for her. It was a heart-breaking adjustment that marked the beginning of an unimaginable journey.

Hallie was admitted to the Noah’s Ark Children’s Hospital for Wales, where specialists discovered that Hallie’s spine had compressed by 75%. The pressure was so severe that without intervention, Hallie would eventually have stopped breathing. Surgery was her only chance of survival.

The clinical team initially feared that they would need to access Hallie’s spine through her mouth, a rare and highly complex procedure only carried out in London and only on adults. Her surgeons thought this would be the safest option as Hallie’s spinal cord was being compressed at the top of the cervical spine, close to where it meets the base of the skull. This incredibly delicate area controls vital functions such as breathing, swallowing, and movement, which is why the compression was so dangerous and potentially fatal.

By this point, Hallie’s speech had changed. Once endlessly chatty, her words became slurred and sparse. Charlene remembers the moment, while speaking to the clinical team, that everything truly hit.

She said: “I knew the consultant was talking but it was like listening to an echo. I couldn’t make out the words. I didn’t want to hear him. I couldn’t breathe.”

On the 29th of September, Hallie was fitted with halo traction, a crucial step to protect her spinal cord before surgery. A halo traction is a metal ring secured gently to the skull with small pins. It’s attached to weights that slowly and carefully pull the head upward. This gradual traction eases pressure on the spine and spinal cord, helping to realign the neck safely and reduce the risk of further damage before surgery. For Hallie, it was a necessary and lifesaving intervention.

The first surgery to decompress Hallie’s spine went well, and Hallie began rehabilitation. But just days later, the repair failed. Hallie was rushed into emergency surgery once again. Only after this second operation could her recovery begin.

Thanks to the extraordinary multidisciplinary team at the Noah’s Ark Children’s Hospital for Wales, including surgeons, nurses, physiotherapists and occupational therapists, Hallie slowly began to regain her strength. Together, they supported Hallie to relearn movement, encouraging her arms and legs to respond again, celebrating each little victory along the way.

But then, Hallie caught RSV.

For most 12-year-olds, RSV would have been manageable. But Hallie’s body was exhausted. Her immune system had been battered by surgery and trauma, and she couldn’t fight it. She spent six long weeks over Christmas in the Paediatric Critical Care Unit (PCCU).

Charlene often plays over the moment where they were asked to step outside while the team worked desperately to stabilise Hallie. Three attempts to intubate her failed and Hallie went into cardiac arrest.

From just outside the ward, the distraught parents could hear it all –  the alarms, the crash call, the sudden rush of doctors and nurses running past with a resuscitation bag. Charlene knew instinctively that it was all for Hallie.

Gareth and Charlene were taken into a side room. Charlene said: “I just remember screaming, asking if she’d gone.”

The team worked for over an hour and a half to stabilise Hallie but the next 72 hours were critical.

“It was the worst time of our lives.”

Charlene says it was the worst time of their lives, but somehow both they and Hallie got through it. Gradually Hallie began to improve and the heavy sedation she had been put under started to be reduced.

It was impossible to predict what impact the cardiac arrest might have had on Hallie’s spine or brain so the process of waiting for Hallie to wake up was an anxious one. Then she moved her finger and Charlene says she knew in that instant that her daughter would be ok.

Then Hallie opened her eyes, and she smiled.

Gareth and Charlene say that Hallie’s spinal team and the rest of the PCCU team saved their daughter’s life and they can’t even put into words how grateful they are.

When Hallie was strong enough, she moved to Island Ward to continue her recovery and today, she’s coming on in leaps and bounds. She still needs overnight breathing support, but she can now stand with support and recently took her first steps.

For Hallie and her family, the Noah’s Ark Charity sparkle coordinator, Emily, has been a constant through their hospital journey. Charlene says that Emily brings a bit of sunshine into every day, with treats for Hallie, and opportunities to smile and laugh when they’re needed it most. When Hallie was on PCCU, Emily even arranged for Charlene to have a pamper session so that she could spend some time away from the ward for herself.

Charlene said: “She’s so thoughtful, not just to Hallie, but to all the girls. She’s amazing.”

Hallie has missed her sisters, Lexie and Ivie, terribly but the family have been able to stay together at Ronald McDonald House, a lifeline during their months in hospital. Gareth and Charlene have also taken it in turns to sleep on the pull-down beds in Hallie’s room – a facility for families funded by you, our incredible supporters.

Hallie will soon move to Stoke Mandeville Hospital to continue her rehabilitation, but first she’ll be spending some short periods at home. And during that time, Hallie has one very clear request: a pyjama party with yellow and pink balloons.

Charlene said: “It’s so nice to see our girl smile again. Everything she’s been through is unbelievable. She’s so strong.”