We meet courageous seven-year-old Katie-Rae and her parents, Neil and Nicola, as our Mirror Christmas appeal for Lifelites continues. Katie has had three open heart surgeries, and she is now blind.
Parents Neil and Nicola’s reaction was to hear Katie-Rae Edmunds, age 7, laugh once more. The brave youngster, who has had three open heart surgeries, almost died, lost, and has since lost her sight, but has not let anything prevent her. She’s amazing, her mother, Nicola Pebody, 36, said in a statement to the Mirror that she had overcome setbacks and is now losing sight of herself. We make the most of each new day because we are so fortunate to have her.
The Mirror’s Christmas appeal, which features Nicola and her partner Neil Edmunds, 44, from Northamptonshire, raises money for Lifelites, a charity that provides life-changing technology to children’s hospice and palliative care services.
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They have seen the excitement that the technology has given their daughter as she was introduced to both Soundbeam, a program that uses sensor technology to convert movement into sound, and Magic Carpet, which allows children to interact and control their surroundings at Rainbows Hospice in Loughborough.
Nicola said: “When she used the Lifelites tech it was amazing to hear the chuckle that we hadn’t heard for so long.” Two weeks ago we launched our Mirror Christmas appeal to ‘Unwrap the Magic of Christmas’ for thousands of children and young people like Katie-Rae. The campaign aims to raise vital funds for them to experience the wonder of life-changing technology.
15, 000 children are currently receiving Lifelites with life-limiting illnesses. Through the use of assistive and sensory technology, the charity gives seriously ill and disabled children the opportunity to play, create, and communicate. This includes the PODS sensory tent and iClick Switches, which allow children with life-limiting conditions to use technology and other household items like computers and computers.
However, 85, 000 children remain without access to Lifelites. Mirror readers can help thousands more receive this groundbreaking technology by making the most of the precious time they have with their families by donating to our appeal.
Katie-Rae was a rare case of hypoplastic left heart syndrome. She had open heart surgery at the age of three days old, and her chances of survival were only 30%. Her mother, Nicola, stated that she had her second open heart operation at the age of four months old, and that she had another at three when she had a silent stroke-related bleed on her brain.
To drain the fluid and remove the damaged cells, she underwent urgent surgery. Due to blood clots on her brain and a second bleed, Katie-Rae was then taken to Leicester Royal Infirmary’s paediatric Intensive Care Unit. We were told the worst, according to Nicola, that there was no return at this time. We were given a Do Not Resuscitate sign-up form, and that is when Rainbows Hospice began to offer us end of life care. The day before her fourth birthday, she was.
Her skull was completely swollen, as she said, “because she had a brain full.” After being removed from life support, we were informed that if she could breathe on her own, her heart might not be able to support her. Everyone was surprised when she actually breathed on her own, then. We left the neighborhood unaware of what was about to happen. No one could believe it until she abruptly made a complete U-turn. She gradually began speaking again and making facial expressions, making her a walking miracle.
She has lost most of her speech, which has since come back, and she has a weakness on her left that makes it difficult for her to walk alone. She also has a helmet because she underwent a craniotomy, had a skull removed, and had a shunt installed. She has a shunt from her brain into her stomach to conduct the drainage because the fluid from her brain doesn’t drain itself.
She’s cheeky and determined, according to Neil, a driver for the HGV. And Nicola asserts that she is still here today due to her stubbornness and ferocity. She keeps her head and heart at bay, and she is aware that she doesn’t have eyesight because of it.
She will be permanently blind, which was a shock when we learned this year. She has since learned to walk with a cane and Braille, but she has also adapted. Stephen, our son, is now 11 years old, who has struggled with what has happened to Katie-Rae because he can no longer play like he used to, but Rainbows has really helped him.
Rainbows continue to provide for Katie-Rae and her family as she seeks out respite stays, which she enjoys. Katie-Rae enjoys Rainbows’ Lifelites tech, particularly the Soundbeam, according to Neil. She laughed as we went there, and the entire room reacted. Her joy was contagious.
A portion of her, according to Nicola, returned and that really helped us. “It brought out a side of her that we hadn’t seen for a while.” We all had to let go of what was happening in that particular moment, which was one of those that allowed us to enjoy it. She is doing so well in class and is speaking so fluently. Amazing, we were informed that she would have no speech or motor skills because of the extent of her brain damage. She’s fortunate because it could have been much worse to emerge from this with no vision and limited mobility.
However, Neil and Nicola are aware of Katie-Rae’s life-limiting condition and uncertain prospects. She said, “Her heart will start failing when she starts to feel weak, and that’s it.” We are aware that there are no longer any options for additional surgery, which is difficult. We have to live each day, which is a blessing, despite not knowing what the future holds.
The Lifelites equipment we have at Rainbows is wonderful for young people like Katie-Rae, according to Maxine Court, Assistant Play Specialist. They can communicate, play with their families, create music, and unwind in calming settings. They face many difficulties, but Lifelites Tech enables them to become more independent and connect with others.
Rob Lightfoot, CEO of Lifelites said: “There are few sounds in the world more powerful than a child’s laugh. For Lifelites to bring joy and laughter back to Katie-Rae’s life through the power of technology is incredible. Living with such uncertainty, those ordinary, beautiful moments are precious. This Christmas I urge Mirror readers to open their hearts and help Lifelites to give thousands of more families these cherished moments.”
Unwrap Christmas’s magic and revel in it
Donate today and unwrap the Magic of Christmas for seriously ill children. Donations from Mirror readers will be used to provide seriously ill children access to life-changing technology that will enable them to play, communicate and have fun in ways that would otherwise be impossible.
- Online donation is HERE.
- Text MIRROR to 70085 to give £10. Text MIRRORNOINFO to make a donation without getting any further information. You’ll choose to receive more Lifelites communications in addition to the donation amount plus one standard network rate message.
- Send checks made payable to Lifelites, 60 Great Queen Street, London WC2B 5AZ
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Source: Mirror
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