Thanks to the Hamodia, Jewish Tribune and Jewish Telegraph for featuring this article.

The parents of a two-year-old boy who is waiting for a double lung transplant have shared their story to help launch Camp Simcha’s ‘Make the Difference’ appeal this weekend. [Feb 5-6]

At five months old, Ori Goldberg, from Prestwich, was diagnosed with pulmonary hypertension after his parents Jess and Rafi had to administer CPR when they found him not breathing.

His condition causes high blood pressure in the blood vessels that supply the lungs, which carries a serious risk of damaging his heart. He is on oxygen 24/7 as well as life-saving medication administered continuously via an IV.

After his diagnosis, Ori and Jess were admitted to Great Ormond Street Hospital (GOSH) for five months, leaving Rafi with their other three children in Manchester.

It was at this point that Camp Simcha, which provides nationwide help to families coping with over 50 different serious childhood medical conditions, came into their lives. The charity immediately organised support both in Manchester and London.

Ori is now on the waiting list for a double lung transplant – and his parents live their lives waiting for the phone to ring.

“Ori’s name means my light – and he literally is our light,” says Mrs Goldberg. “He’s such a happy-go-lucky little boy.”

However, life has been very hard for the family over the last 18 months.

“Camp Simcha’s support has been vital for all of our family. Now we want to share our story to help make sure they can be there for others who need them,” says Mrs Goldberg.

The charity sent in meals, arranged a variety of therapy for Ori’s siblings; as well as volunteers and summer day scheme activities for the children while Jess was at GOSH; family and sibling retreats and other bespoke support.

As a full-time carer for Ori, Mrs Goldberg is unable to work.

“Knowing we can get transport to the hospital, knowing when things are hard Camp Simcha will provide meals… the outings are always organised and paid for. It all takes the pressure off of us. Camp Simcha manage to fill any gaps we didn’t even know needed filling.

“We are so grateful to them for making such a huge difference to our lives, for creating memories and for bringing my family closer together even in this tough time.”

The cost of living crisis, following two very hard pandemic years has meant more and more families across the wider kehilla are turning to Camp Simcha in desperate need.

It costs the charity £2.8million annually to provide its range of 23 bespoke practical, therapeutic and emotional support services to every family in the UK who needs them.

The charity’s 36-hour ‘Make the Difference’ campaign begins on Sunday 5th February at 10am.

You can donate here