From then on, Zack, now eight, and his Borehamwood family have been supported by Camp Simcha.
“It was just so tough at the beginning because Zack has a twin sister, Zoe, so we were first-time parents coping with two babies, one of whom needed considerable extra care,” Mrs Whiteley said.
“Zack’s needs were a full-time job on their own — and there was all the emotional anguish his diagnosis brought.”
Over the years, Camp Simcha has provided therapeutic art sessions for both twins, a volunteer for Zoe, a weekly mother’s help when the twins were little, as well as treats and outings.
“Zack’s condition tends to fluctuate,” Mrs Whiteley added. “Sometimes everything is fine and we are in our routine of his daily physio, nebulisers [medication delivery] and the 30 pills he takes a day. When things are bad, it can mean two-week hospital stays.
“Other people can’t really understand what it’s like and I don’t want to always be talking about Zack to my friends.”
At the first meeting of the support group, “one of the other parents gave us really helpful advice about Jewish secondary schools. Having a group of people you can turn to for advice or ideas is great. The more parents who join, the more we can do.”
Camp Simcha currently helps three families with children with cystic fibrosis. It hopes the support group will persuade others to come forward.
