Missed diagnosis: Ryleigh Hillcoat-Bee’s tragic passing

No parent should ever have to endure the unimaginable pain of burying their child—especially when the tragic happening could have been prevented.

Yet, for Andrew Hillcoat and Caroline Bee, this heartbreaking reality became their world after a series of missed medical opportunities led to the tragic loss of their bright, loving three-year-old daughter, Ryleigh.

Her story is a call to action, a reminder that no stone should ever be left unturned when it comes to a child’s health.

Glaring red flags
Ryleigh Hillcoat-Bee was just three years old, full of joy, and loved Peppa Pig, carrot sticks, and peas. Tragically, she passed away from a rare condition known to affect young children. Her story serves as a painful reminder of how crucial it is for medical professionals to listen to parents, trust the signs, and act quickly.
It all began in August 2021 when Caroline and Andrew took their little girl on a holiday to North Wales after COVID restrictions had finally lifted.

But should have been a joyful trip took a worrying turn when Ryleigh became floppy and lethargic. Concerned, her parents rushed her to the hospital, where doctors discovered elevated potassium levels and extraordinarily high levels of Creatine Kinase in her blood. These were glaring red flags — but instead of digging deeper, the hospital sent her home.

Doctors assured the family that her illness was likely a one-time event and scheduled a follow-up appointment six to eight weeks later.

”Doctors reassured us her illness was likely to be a one-off,” Ryleigh’s parents told Manchester Evening News.
Woke up crying
Three months later, on November 8, 2021, everything changed. The day before, Ryleigh had been her usual playful self, enjoying time at a soft play center and ending the evening with a comforting dinner of fish fingers, chips, and vegetables. She went to bed as usual, but hours later, she woke briefly, seeming unwell.

By the morning of November 8, her parents’ unease turned to panic when they heard her crying. Caroline and Andrew knew something was seriously wrong.

Their daughter’s breathing had become raspy, and her cries sounded weak

Cause of death
After Ryleigh’s tragic death, doctors were left baffled, unable to determine what had caused the cardiac arrhythmia — or irregular heartbeat — that led to the toddler’s passing.

Months later, medical experts confirmed what had caused Ryleigh’s death. She had a rare metabolic disorder called Lipin 1 deficiency.