Eight months ago, Jardena and David’s son Yoni woke up unable to walk.
After a terrifying month where his paralysis spread, he was diagnosed with Guillain-Barré Syndrome, a rare but treatable disorder which affects nerves. Thankfully Yoni is now almost recovered and back at school but here his mother explains how Camp Simcha’s support made the difference.
“It was the first day of Pesach in 2023 and my five-year-old son Yoni woke up and said he couldn’t walk. We took him straight to A&E where they started to run tests and eventually admitted us but as the days went on, he kept deteriorating. By mid-April he was completely paralysed. It was terrifying.
He was diagnosed with Guillain-Barré syndrome – a very rare immune system disorder that affects the nerves and can lead to weakness and paralysis.
It’s treatable but we were told it could take time. In some cases recovery can take one to two years. It was at this point we were put in touch with Camp Simcha.
With a five-year-old in hospital unable to move and a three-year-old at home whose life had suddenly been totally disrupted, having our Camp Simcha family liaison officer Orly there, offering all these ways that Camp Simcha could help was amazing, especially when I didn’t have the band width to think what we needed.
She arranged for Adam Ants, the children’s entertainer, to come to hospital. The kids already knew him from parties so they were so excited. To see Yoni giggling in hysterics and smiling (pictured below) in the midst of everything he was going through was wonderful.
Orly also arranged practical support such as transport to help us with the logistics of splitting our time between the hospital and looking after Ben.
Once Yoni had been discharged, there were still constant appointments, often back to back, so on the really hard days, Camp Simcha would arrange for a meal to be sent in for when we got home. We also had a lovely, dedicated volunteer who came on Sunday mornings which was really exciting for the kids and gave us a break.
Yoni made a really good recovery but when he came home from hospital, he was still suffering from nerve pain and could only sit unaided for a few seconds. He had to learn to do everything again, to crawl, stand, walk, run, jump, go upstairs – and he had to get his strength back.
Art therapy is helping him work through the trauma of being paralysed at the age of five; it was terrifying for him but we hope with the Camp Simcha therapy we are making sure it doesn’t become a long-term trauma.
One of the most amazing aspects of Camp Simcha’s support was family retreat (pictured above). It’s hard to put into words how amazing retreat is, all the incredible activities, but for Yoni one of the most impactful aspects was seeing other children who were also in a wheelchair, and not feeling different anymore. When you are struggling with things, you feel like you are the only one who can’t do something so it was really important for him to realise he wasn’t the only child coping with difficulties.
Camp Simcha are like a big warm hug. You feel like everything will be ok, because Camp Simcha are here.”