Bev Cohen’s daughter Liora has complex needs – among them uncontrolled epilepsy, as well as autism – with no language – and a chronic kidney condition
“Since we had Liora 12 years ago Camp Simcha has been there for us in so many ways.
Liora has complex needs which mean she needs to be watched round-the-clock, even at night, because there is a complication of epilepsy known as SUDEP – Sudden Unexpected Death in Epilepsy. It is difficult to find people who can look after her. It cannot be a normal babysitter; not only does this kind of care cost more but it is not always easy to find, especially at short notice.
All the support Camp Simcha gives me makes a big difference to us, but the lifeline is the respite care they provide at crucial times of need when I am on the floor and don’t know how I am going to manage.
That can be sending in a carer in a crisis, such as the time I needed an urgent doctor’s appointment for myself and had no one to look after Liora. One call and Camp Simcha came through. Or it can just be when I am so exhausted that I feel like I cannot go on. Believe me when you are caring for a child round the clock that happens more frequently than you would like.
Knowing Camp Simcha will be there when I cannot cope any more is like having a cushion when you hit rock bottom or having a cuddle from someone who really gets it.”