Setayesh is ten and lives in London with her dad, Nasir. Setayesh is autistic.
Nasir explains that Setayesh’s autism has a number of effects. “She would love school, but she can’t communicate with others, she can’t talk. She can’t use the toilet, and has to use nappies. They’ve said she will be ok at around 15/16 years old.”
Nasir also helps Setayesh with everyday activities and strengthening exercises. “She’s not able to do certain things, and needs help to do things like shower. Her body muscles aren’t strong enough to carry her weight, so we dance to practice strengthening them.”
As Setayesh’s main carer, Nasir has had to support the family through a lot of change. “My wife left us, I lost my job, and we don’t know any other families in the UK. I can’t describe it, (caring for Setayesh) is a very big job. The biggest part is that I’m not able to work, so it affects my life in that way.”
During the day, Nasir explains “She’s busy with school, so I might be waiting for a GP referral or picking up her medicine to help her sleep. When she gets back, I’m looking after her, and feeding her. I enjoy helping her to draw something or playing with her.
How Family Fund helped
Setayesh’s family received a grant for a new fridge and some new clothes in 2020. “The fridge is helpful as our old one was broken, and it now means that we can store fresh food for Setayesh. The £100 clothing voucher meant that we could get her some new warm clothes.
“The fridge means her diet has improved, and the clothing voucher means she has access to warmer clothes during the colder months. As we aren’t getting Disability Living Allowance, it was a big help to us”.
You can watch Setayesh star in the McCain and Family Fund: ‘Little Moments’ TV Advert.
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