Chief executive Neville Goldschneider expressed delight that “in these difficult times so many people came along to give their support, enabling us to go on making that critical difference to families who need us”.
Because of his condition, Sammy — who is fed through a gastrostomy tube — had to leave the Billy Elliot cast. “That’s when we stared getting more involved with Camp Simcha,” explained his mother Sara.
“They’ve been amazing from the start, helping the whole family as well as Sammy. Our whole life is spent looking after Sammy. He’s on a lot of medication and can be in a lot of pain so it’s amazing to know someone is looking after his twin brother Joshy [who is supported by the Camp Simcha big brother and sister volunteer programme.
“Joshy’s big brother is amazing. He takes him out bowling, for fish and chips and makes a real fuss of him.”
Sophie Behrman, Sammy’s Camp Simcha big sister, said the role was “hugely rewarding.
“I got involved around two-and-a-half years ago when I moved to London from Manchester. Sammy and I go out and play. He’s so bubbly that sometimes I forget about his illness.” The 22-year-old has asked Sammy to be a page boy at her wedding.
The Bentwoods look forward to Camp Simcha’s two-week summer retreat.
“When you’re there you don’t have to apologise or explain your child’s behaviour,” Sammy’s father Jonny explained. “Not every child has the same illness but there’s an understanding there. You feel comfortable.
“The sad story remains the same in that Sammy still cannot eat, is in chronic pain and there is no chance of a cure. Saying that, he is amazing and acting and singing brings him to life. Camp Simcha has been an incredible lifeline to us all, not just for Sammy but his siblings too who are often the forgotten part of any disability.”
Among the dinner speakers was paediatrician Dr Warren Hyer, who told guests that dealing with a child with serious illness could impact on the family infrastructure. “These families are under unbearable strain.
“Camp Simcha is not about researching a cure. It is the only Jewish charity whose primary role is to support these families. [They are] refreshed with a retreat, a visit of a Camp Simcha brother or sister and allocated family liaison officers.”
