I want to introduce you to our beautiful boy, Sacha Elijah Cox.
Sacha was born on 18 August 2020, and from an early age began fighting an extremely rare gene mutation called NEMO, causing immunodeficiency disease, osteopetrosis, ectodermal dysplasia and lymphoedema. Big words and even bigger challenges, but Sacha faced everything with a smile, filling each day with love and light.
Meet Sacha
Sacha was diagnosed with NEMO at just five months old. From then on, he underwent three and a half years of intense treatment, including multiple surgeries, bone marrow transplants and many other intrusive procedures. Despite all of this, Sacha was the funniest, happiest little boy who absolutely loved the world around him.
He loved to play with dinosaurs, cars and trains, and he adored reading – especially Julia Donaldson books. The Gruffalo, Room on the Broom, Stick Man and The Highway Rat were all firm favourites in our house!
Paddington Bear was another big love of Sacha’s. He was so taken with everything Paddington did on his adventures that he even copied his politeness and speech.
Dinosaurs, though, were always front and centre — all his clothes had dinosaurs on them, and he would wander around the house roaring his biggest roar, making dinosaur “wootprints” in the carpet with his little fingers.
The little moments that mean everything
Sacha loved waving at the big buses that passed by, and every now and then, he'd get a wave back — which made him absolutely light up. But the real highlight for Sacha? A fire engine racing past with sirens blaring.
“Look, Mumma! A wire-engine going to put out all the wire!” he’d say.
His excitement was contagious and always brought us so much joy.
He loved gathering sticks, finding puddles and discovering tiny pools of water at the base of trees, giggling as he chased his Mumma, Lisa, with soggy sticks.
We’d sit together on a bench, watching the world go by and he’d say, “Let’s get Dadda’s cup of co-ff-eee.”
We loved all of his little sayings. Every now and then, we’d share a Sacha sausage bap – a small, simple moment that has become one of my most treasured memories.
A life of courage and spirit
In Sacha’s inspirational yet brief 1,369 days with us, an incredible 572 of those days were spent in hospital – meaning 45% of his life was lived within its walls.
And yet, through it all, Sacha’s strength and spirit shone brightly. He absolutely loved life and shared his boundless love with everyone around him.
Tragically, Sacha passed away on 5th June 2024 after contracting an infection. But he faced each day with incredible bravery, strength and a fighting spirit that inspired all who knew him.
Centred on Sacha’s joy: what Julia’s House meant to our family
Although Sacha had only just begun his journey with Julia’s House, the impact it had on us all was truly heartfelt.
Sacha thrived when surrounded by love and attention, and his time with Julia’s House gave him exactly that. Emily, his wonderful Named Nurse, along with the wider team, made sure every moment was centred around his joy.
At the Devizes hospice, Sacha was excited to explore the play spaces and sensory room, with Emily making a fuss over him every step of the way. His time there was filled with laughter and happiness — it’s something his Mumma and I will never forget. Seeing Sacha so full of life and excitement was a gift, not just for us, but for the incredible staff who got to witness his bright spirit.
For us as parents, the support we received from Lisa, our Julia’s House Nurse, and the team after Sacha’s passing is beyond words. In our most difficult moments, when we weren’t even sure what we needed, Lisa was there — a reassuring voice, a listening ear, and a source of comfort and strength for us both. That support continues to this day, and we are forever grateful.
What Julia’s House provides for families like ours is immeasurable. The love, care and compassion they give makes an impact that words can never fully express. From the bottom of our hearts, and on behalf of our entire family — thank you for supporting Julia’s House, and for helping families like ours feel held, cared for and never alone.