Sylvie, 37, cares for her son Imohtep, eight, and her two other sons. Imohtep has a rare chromosome disorder.

I’ve been caring for Imohtep since he was born. He’s completely dependent. It’s not just physical but also mental. I have to feed him, do personal care and he uses a wheelchair.

Imohtep’s condition is rare so they don’t know what’s going on. When you go to professionals you are seeking an answer but they don’t know everything.

When you care for someone who’s completely dependent it has a big effect on you. It’s tiring. It’s challenging mentally and physically and there’s ongoing stress. Everything goes very fast and I haven’t got my family around. Even if you have friends they’re busy working.

Importance of sharing carer experiences

When I’m thinking about doing the shopping I’m tired already. My youngest son is jumping around the place, sometimes he wants to be in the trolley or to pick up everything in the shop. I have two hands. Wheelchair, pushchair – what about the trolley? This is the life of the carer. Just doing this is a fight so you don’t need other fights.

I don’t go out in the evening; I don’t go out at the weekend. I cannot leave Imohtep with a friend because he’s in nappies. You don’t have a social life anymore and you start to feel lonely.

I joined organisations like my local Carers Trust Network Partner. I started meeting people in the same situation. Then you can feel better because you can share your experiences and you can share information. This is very important.

There’s a sibling project sponsored by my local carers’ centre. My oldest son started with them from six years old and they do outings, sometimes holidays.

I find that good because when we do outings with the family and Imohtep most of the time I ask my older son to help me so he doesn’t enjoy it much. He goes to the sibling project and has a nice time, he can have some freedom.