Kimberley is mum to Rocco, who has Spinal Muscular Atrophy Type 1, a rare genetic condition which affects all his nerve cells and muscles.

She explains that having a child with a rare condition can be very isolating.

“Friends are supportive of course, but it is not a normal situation and what we go through on a daily basis is so extreme that it’s almost hard to talk about it because only people who are in that world truly understand. Plus you don’t want to burden friends and family.

“With Camp Simcha we get a blanket of support – our Family Liaison Officer is a lifeline, helping us survive when we are going through very difficult times, holding us, understanding the situation and providing the practical and emotional help we need.
“What we also get from Camp Simcha is that community of people who just get it. When we go on retreats and outings – other parents understand, they don’t have to ask questions because, while the condition may be different, they are going through similar daily struggles to us. I have a WhatsApp group with other mums from Camp Simcha and they know that when I go quiet on that or on social media, something has probably happened with Rocco – and so they check in on me. Having that support network really negates the emotional isolation Rocco’s condition brings.”

If you know of a family who needs our support, please get in touch confidentially on 020 8202 9297 or complete this form and someone will be in touch.