The sound of seven-year-old Katie-Rae Edmunds laughing again was a moment of profound emotion for her parents, Neil and Nicola. Their courageous daughter has endured three major open heart surgeries, faced death, temporarily lost her speech, and has now been diagnosed with permanent blindness. Yet, her spirit remains unbroken.
A Journey of Resilience and Setbacks
Katie-Rae was born with the rare Hypoplastic Left Heart Syndrome. Her fight for life began almost immediately. At just three days old, she underwent her first open heart surgery, with doctors giving her only a 30% chance of survival. A second operation followed when she was four months old, and a third at age three.
The complications were severe. After her third surgery, it was discovered she had suffered a silent stroke, causing a bleed on the brain. She needed urgent surgery to remove damaged cells and drain fluid. Rushed to the Paediatric Intensive Care Unit at Leicester Royal Infirmary due to brain clots and a second bleed, her family faced the worst.
"We were told there was no coming back," said her mother, Nicola Pebody, 36. The family was asked to sign a Do Not Resuscitate order and was introduced to Rainbows Hospice in Loughborough for end-of-life care. "It was the day before her fourth birthday," Nicola recalled.
Miraculously, Katie-Rae began to breathe on her own. "She made a complete U-turn... She was a walking miracle," said Nicola. However, the damage was lasting. The condition caused blindness, weakness on her left side preventing unaided walking, and the loss of most of her speech, though this has since returned.
The Lifeline of Lifelites Technology
Now, Katie-Rae and her family from Northamptonshire are championing the Mirror's Christmas appeal to raise vital funds for the charity Lifelites. The charity provides life-changing assistive and sensory technology to children's hospice and palliative care services across the UK.
At Rainbows Hospice, Katie-Rae experienced the joy of Lifelites' equipment, including the Magic Carpet, which projects interactive images onto the floor, and Soundbeam, which translates movement into sound.
"When she used the Lifelites tech it was amazing to hear the chuckle that we hadn’t heard for so long," Nicola said. Her father, Neil Edmunds, 44, added: "Katie-Rae loves the Lifelites tech at Rainbows, especially the Soundbeam. Her joy was contagious."
The technology offers children with life-limiting conditions the chance to play, create, and communicate. Other tools include iClick Switches, allowing operation of computers with any body part, and sensory PODS tents.
Facing an Uncertain Future with Hope
The family received the devastating news this year that Katie-Rae's blindness is permanent. "It was a blow. But she has adapted and is learning Braille and learning to walk with a cane," said Nicola. Her older brother, Stephen, 11, receives sibling support from Rainbows to help him cope.
Nicola acknowledges the hard reality: Katie-Rae's condition is life-limiting. "When her heart starts to fail, she will be in heart failure and that’s it. We know there is no more option for more surgery," she said. "We don’t know what the future holds but we just have to live each day and each day is a blessing."
Lifelites currently reaches 15,000 children, but estimates suggest 85,000 more are without access to their transformative technology. Rob Lightfoot, CEO of Lifelites, said: "For Lifelites to bring joy and laughter back to Katie-Rae’s life through the power of technology is incredible."
Maxine Court, Assistant Play Specialist at Rainbows, emphasised the equipment's value: "It enables them to play with their families, create music, communicate and relax... and connect with the people around them."
The Mirror's 'Unwrap the Magic of Christmas' appeal aims to fund this technology for thousands more children like Katie-Rae, offering precious moments of joy and connection in the face of immense challenge.
