At five-months old Ori Goldberg was diagnosed with pulmonary hypertension, a rare condition which meant the blood pressure in his lungs was too high, putting a life-threatening strain on his heart. His family had four precious years with him, treasuring the joy he brought to their lives along with the heartache of his struggle – seeing every day as a miracle.

Here his mum Jess shares their family’s journey since his loss a year ago and pays tribute to Ori, a very special little boy who won the hearts of all who knew him.

“When your child is diagnosed with a serious illness it feels like you’re suddenly walking in a parallel universe. Friends and family are amazing, but nobody truly understands how it feels. I remember having a tightness in my chest every time I got a message saying, ‘How are you’? I just didn’t know how to put it into words.

“When Camp Simcha came into our lives, that tightness lifted. I was brought into a community of people who lived in the same world and truly understood. Even in those final weeks of Ori’s life, and still now, that group of Camp Simcha mums means everything.

“It’s like a sisterhood. I could say things to them that I couldn’t say to anyone else.

“During the shiva, every time I saw a Camp Simcha face, a staff member, a volunteer, a parent – anyone connected, it was so heartwarming.

“A huge part of that understanding also came from our family liaison officer, Daniella. Immediately, I felt I could talk to her and she would just listen and translate it into the support we needed. Meeting her regularly throughout Ori’s illness and since helps me process everything.

“Camp Simcha supported my husband Rafi and I, and my other three children, continuing to be such an important part of our lives over this past year. The volunteers were a huge presence, and as a family we are so grateful to them – I could see how much it helped our children. Rafi and I talk to them about Ori a lot, but I don’t know how much they talk to their friends about Ori and I often wonder how they’re doing in this new normal. Then I watch them with their volunteers, and it’s like that part of their life – the part connected to Ori – comes alive again.

“It was such a difficult, frightening time, but also one filled with joy and love. The kids were so proud of Ori, and they loved being part of Camp Simcha. When they’re out with their volunteers now, that sparkle I used to see returns. We don’t have to talk about the pain, but you can see that they feel that connection with Ori – it keeps his memory bright and connects them to that time in our lives that, though hard, was also full of laughter, love and togetherness.

“Camp Simcha gave us so many chances to have fun, and because of that, our home was always about joy. It was never about Ori being ill, it was about living. When we sat shiva, I filled the room with pictures of Ori – so many happy memories. Those photos are still up, and I often sit and look at them. Trampoline parks, Ori in fancy dress, foam parties, meeting Cocomelon (his favourite) – these were all things organised by Camp Simcha. I didn’t have the headspace to plan anything; even leaving the house was overwhelming.

“But they made it possible for us to create positive memories that still warm us now and help the kids remember the joy instead of the trauma.

“As we prayed for Ori to get his transplant, we wanted to do something that would make an impact but be inclusive in a way that was light and full of gratitude. That’s how Move for Ori was born. We asked people to have gratitude for their body and health, and to move in any way. People were running, dancing, swimming – and recently the Camp Simcha mums did Zumba in his memory. It captured everyone’s imagination – even though we live in Manchester we had schoolchildren in London ‘moving for Ori’ and so many people told us it helped them see life through a positive lens.

“Everyone who met Ori fell in love with him. The community nurses used to love coming to visit him on Fridays – they adored him. When Camp Simcha held an awareness event in hospital recently, apparently one of his old carers walked by and said, “Do you know Ori?” – that’s the kind of impression he left.

“When he passed, it felt like everyone shared our loss.

“Ori’s name means “my light,” and that’s exactly what he was – a beacon of light and hope. He reminded people to keep believing, to keep smiling, to live gratefully. I hope Move for Ori keeps that spirit alive. It’s his legacy: to bring light and live joyfully, with gratitude and love.”