“For me, it’s the blend of different types of support that makes Camp Simcha so special.

Since we had our complex needs little girl, Liora, 12 years ago, I’ve learned that organisations and medical facilities can be very good at the thing they do, from medical issues to supplying equipment for disabled children, but these very same people can sometimes be oblivious to the wider picture of my situation, as they are focused on their specialism. This is fair enough, of course, but Camp Simcha seems able to embrace the wider picture of being a parent of a disabled child and has the sensitivity to look at me as an individual and what I might need.

I feel hugely supported when my family liaison officer Joanne comes with me to Great Ormond Street appointments.
 When I go alone, I know I won’t be able to go to the loo in between leaving my home and getting back, as I can’t leave Liora alone and her autism makes it almost impossible for her to come with me. I know I can’t get a coffee as she can’t stand in a queue and I may not get to sit down as she can’t stay still for long, I will be chasing her down corridors she’s not supposed to be in and dealing alone with her self-harming behaviour when she’s stressed by street noise and transitions from one environment to another. Having Joanne there means I get a constant stream of support from someone who knows Great Ormond Street well, offers yummy food and generally helps me during the appointment, so I get to focus on what the doctor is saying. Arrival and departure are still stressful, but a trouble shared is a trouble halved. Friends and family have come with me in the past, but there’s a limited amount of times I can ask. And Camp Simcha’s support with taxis to get to the hospital and back from the major stations make such a difference, as Liora can’t manage the tube or the street, taking her on public transport can be unspeakable.
Bev Cohen

Joanne offers emotional support in a non-therapy type way, she is always there if I need her, phoning back quickly or letting me know when she can speak.
I can chew over any type of stuff with her, she was instrumental in my family’s decision about Liora starting a major dietary treatment with the hospital for epilepsy, and there during the year of hell when Liora was starving hungry and the treatment wasn’t working. I can have a cry with Joanne about how hard it is being the sister who has the disabled kid. Whatever it is, she always has a sensible, kind perspective and thinks pro-actively about how she can help, for example she offered to accompany me to Ravenswood to look at their accommodation for disabled adults. I know she will set this up when I need it and save me the trouble of organising it. She’s currently looking out for holiday rentals that will accommodate our needs, this is totally invaluable as it saves me a job when I’m up most nights meeting Liora’s needs.

And, of course, Camp Simcha offers amazing funding for carers at crucial times of need when I’m on the floor and don’t know how I’m going to manage.
Then there’s the thoughtful birthday gifts – instead of buying inappropriate things, Camp Simcha always asks what Liora might want. Retreat, of course, is such a lovely experience, the carers paid for, the hanging out with lovely young carers and staff and other parents in similar situations. I have so enjoyed meeting Meir and Rachely who right from the start have been so supportive. It’s quite something to meet people who simply want to give, without any agenda. I kept asking Rachely if I could do something in return for Camp Simcha and she kept telling me it was my job to receive. This is a rare and wonderful thing.

I find Camp Simcha so tailored to my personal needs in so many ways that it’s like being cuddled by someone who really gets it.
Camp Simcha is always there. I’m so so grateful.”