The wonderful Sacha Elijah Cox, born August 18 2020.
Whenever Sacha’s name comes up, the first thing his mum, Lisa, says is that he was “such a happy little boy.” Even after everything he went through – the procedures, the pain, the endless hospital days – he was polite, sweet and full of sunshine. Nurses would carry out the most uncomfortable tests, and through tears he would still whisper “thank you.” It was a kindness that stayed with everyone who met him.
Sacha sadly died on 5 June 2024 after contracting an infection. Despite everything he faced, he met each day with such courage and determination, leaving a lasting impression on all who knew him.
A Medical Journey No Child Should Face
Sacha Elijah Cox was born with an extremely rare genetic condition called NEMO, a combination of immunodeficiency, osteopetrosis, ectodermal dysplasia and lymphoedema. Only around 30 people in the world have ever been diagnosed with it. Sacha was the only surviving child with his variant.
He was just five months old when the diagnosis came. From that moment, his life – and the life of his whole family – became a cycle of hospital stays, treatments and moments of hope threaded through fear. Over three and a half years, Sacha endured surgeries, bone marrow transplants, infusions, Hickman line infections, sepsis, pneumonia, a bleed on the brain, vascular complications and countless invasive procedures. He spent 572 days in hospital – almost half of his life.
And yet, he was sunshine.
The Beads of Courage
As the list of procedures grew, Lisa began keeping track of everything he had been through. When a nurse introduced them to the Beads of Courage, it became a way of honouring every scan, every transfusion, every dressing change, every moment of bravery.
“It was mammoth,” Lisa said. “We had lists of everything he had done – blood transfusions, X‑rays, MRIs, dressing changes – and the nurse spent her evenings going through it all so he could have the beads he deserved.”
Each bead marked something Sacha had been through – a treatment, a challenge, a moment of progress. By the end, the strand had become a colourful reflection of his journey. At his funeral, the beads were laid out with a simple guide explaining what they represented, so people could quietly appreciate everything he had faced.
“It really should be displayed,” Lisa said. “One day we’d love to have them made into a resin table so everyone can see them.”
Who Sacha Was…
Sacha adored dinosaurs. He would stomp around the hospital in his dinosaur onesie, roaring at nurses who pretended to be terrified just to make him giggle. He loved making “dinosaur wootprints” in the carpet with his fingers, proudly showing anyone who would watch. Cars, trains, buses and fire engines were another source of excitement – he waved at every single one, delighted whenever a driver waved back.
He was captivated by Julia Donaldson stories like The Gruffalo, Room on the Broom, Stick Man and The Highway Rat, often acting out the characters with his own little flair. And he adored Paddington Bear. He copied Paddington’s gentle manners so perfectly that nurses would thank him after a procedure and he’d reply, in his sweet little voice, “you’re very welcome.”
He was polite, sweet and full of life – a child whose personality shone through even on the hardest days.
“He just had everybody in the whole hospital loving him,” Lisa said. “He was such a character.”
Much of Sacha’s life was spent in a cot, attached to pumps and lines for hours at a time. He had to be fed slowly overnight through a jejunal tube to keep him safe from reflux and aspiration. His skin needed constant care because of graft‑versus‑host disease. His bones were fragile. His veins were difficult to access. His finger eventually had to be amputated after vascular complications. He was tiny – still in 12–18 month clothes when he turned 3 years old – but he had a spirit far bigger than his body.
“He didn’t know any different,” Lisa said. “He always dealt with these big things… he would just deal with it.”
Sacha was the youngest of four children, and his siblings adored him. His older brothers, 27 and 21, and his sister, now 13, helped care for him and supported their parents through long stretches at Great Ormond Street Hospital. The family lived in a rhythm of week‑on, week‑off hospital stays, long drives to London, and constant vigilance around infection. “It was a big toll on the family,” Lisa said. “But everyone pulled together.”
Finding a school for Sacha was a long and emotional journey. His family searched every village around Swindon for a small, safe environment. When they finally found a school they loved, Sacha visited, explored the classroom and proudly tried on his tiny trousers. “He was so excited to go to school,” Lisa said. “He claimed all the toys when he visited. He loved it.”
Although he never got to start school, his sister reminds Lisa, “Mum, he still went to school – he went in there and he enjoyed it.”
Jessie May’s Support
Throughout everything Sacha went through, Jessie May’s nurses became a lifeline for the whole family. Because his care was so complex, only a handful of people could safely look after him. Jessie May visited twice a month for three hours – the only moments Lisa could leave the house to shop, rest, or simply breathe. “They were literally all we had,” she said. “What they did for us was absolutely amazing.”
Mary, one of his nurses, became Sacha’s favourite person in the world.
“He loved Mary,” Lisa said. “He would call everyone Mary – even hospital staff.” Their bond was so strong that Mary is still part of the family’s life today, despite no longer being a Jessie May nurse. Mel was another constant source of comfort, stepping in with the same warmth and humour that made Sacha feel safe. “Just being around them lifted you,” Lisa said. “They were an absolute godsend.”
The nurses didn’t just care for Sacha – they cared for Lisa too. They asked about every procedure, every setback, every tiny win. They listened. They understood. They held space for the exhaustion and the fear. “It was nice in itself to have someone to offload to,” Lisa said. “Someone who understood and was interested.”
After Sacha died, that support didn’t stop. Jessie May continued to walk alongside the family with gentle, consistent bereavement care. Lisa now attends the charity’s bereavement coffee mornings – safe, welcoming spaces where parents can talk openly, cry, laugh, or simply sit with others who understand the depth of child loss in a way few people can.
At one of these coffee mornings, Lisa met another parent who had also lost a child to NEMO – something she never imagined possible. “I was absolutely blown away, as it’s so rare!” she said. The connection has become a precious source of comfort in a world where so few people understand the condition.
Michelle, one of Jessie May’s bereavement team, has also been a huge support. Lisa describes her as someone who “just gets it” – someone who listens without judgement, remembers Sacha with her, and gently guides her through the hardest days.
“She’s so thoughtful. She gives me time to just sit, open up and explain the things I’m finding difficult. And she’s always there to listen. She’s so flexible with her time and how often I want to be seen. She thinks of things that might help with Izzy, Sacha’s sister, and with my husband too. It’s so lovely that she’s there to support us all still.”
Lisa also takes part in Jessie May’s Tree of Light, a remembrance event that gives families a meaningful way to honour their children. For Lisa and her family, it’s a moment to pause and feel Sacha’s presence.
“We’ve been to the Tree of Light for the last two years, and it has meant so much to us. We take all of our family. It’s very emotional, really emotional, but it’s needed. It comes just before Christmas, when everything builds up inside you, and sometimes you just need somewhere to release it. I feel like that’s the perfect place to do it.”
Sacha’s Legacy
Sacha’s memory also travels far beyond Swindon. His family created Sacha’s Rocks – painted stones decorated with some of Sachas favourite books; people take these on their travels and leave around the world. They’ve been found on beaches, mountains, forests and cities across continents. Each one carries a little piece of him, spreading his light in places he never got to see.
Today, Lisa and her family run Sacha’s Journey, raising awareness of NEMO and supporting the charities that supported them. They hope Sacha’s courage, brightness and spirit continue to inspire others.
“He went through so much,” Lisa said, “but he was such a happy little boy.”
And Lisa continues to speak about him so proudly, openly, and with so much love. She has found that talking about Sacha not only keeps him close, but also helps others understand what families like hers go through.
“The more awareness there is around a child’s death, and how it affects parents and siblings, the better. It would be wonderful if sharing our experience helped others understand how to support families through such a hard time. My way of feeling close to Sacha is to keep sharing him with people and to talk about him. But everyone’s way is different – there is no right or wrong.”
That is how Sacha is remembered – a child who filled every day with love, light and laughter, even in the hardest of times. And through the stories his family continue to share, his light keeps travelling, reaching new hearts and reminding the world of the little boy who would brighten up an entire room.
