Manchester couple Tony and Tracy Levene have spoken movingly about their 12-year-old son’s struggles with muscle-wasting disease Duchenne Muscular Dystrophy as part of Camp Simcha’s Pesach appeal.
Joey was 19 months old when his family received the devastating diagnosis of the condition, which over time impacts all muscles in the body. He can now only walk short distances and cannot go up stairs.
He watches his friends play football, unable to join in. He sits in the library during activities at King David High he cannot participate in. After school, his daily routine involves lying on his bed while a machine works the muscles in his legs and arms. This is followed by further physio.
Camp Simcha has been supporting the Levenes, as it does other families with children with serious illness.
“When we first got the diagnosis, it felt like our world had been shattered and nothing was normal or would ever be normal again,” Mr Levene told the JC.
“When Camp Simcha got in touch, I wasn’t sure whether we needed them. They suggested we come to one of their events to see what happiness it could bring to the family. They were right.
“They made Joey smile more than I have ever seen him smile. More than that, they gave Joey the ability to feel normal again.
“Parties, retreats, it’s been just incredible. I get to see my whole family relaxed and happy. The best Camp Simcha moment for me was when we went to our first retreat. I was reluctant to go but it was very emotional, breathtaking even, to see the change Camp Simcha makes to the lives of so many families. Just looking around and seeing the happiness is amazing.”
Joey and his sister Leora, eight, both have a volunteer Camp Simcha Big Brother and Sister who they have become close to. Although Joey’s older sister Mia doesn’t have her own volunteer, she loves attending the retreats.
Mr Levene said the volunteers “are fantastic. They sit with Joey when he is on his machine so he has someone to talk to.
“They have had such a positive impact on the children. Joey was a page boy and Leora a bridesmaid at his Big Brother’s wedding.”
Last year, Joey was one of a handful of children Camp Simcha took to a camp in America run by sister organisation Camp Simcha USA. Each was escorted by their Camp Simcha Big Brother or Sister.
Tracy Levene said agreeing to let Joey go to the States was one of the hardest decisions she had taken.
“You worry about how someone is going to be able to look after your son. But the more we spoke about it with Camp Simcha, the more I realised that they had everything in place to help him have an incredible time.
“He loved it so much that when he got back, all he kept saying was ‘can I go next year’? It made him feel elated, like he has the confidence to do anything. For us, seeing Joey so happy is what gives us the biggest smile.
“Prior to Joey, we were just a normal family. You always believe [such a diagnosis] is not going to happen to you.
“You read it about it in the paper or on Facebook. I never thought it would be us, that we would need Camp Simcha. But now we have them in our lives I don’t think it is something we can ever do without.”
Appeal proceeds will go towards Camp Simcha family services.