Our daughter needs 24-hour monitoring

Manwar and his wife, from Keighley, care for their daughter, aged 3, who has spinal muscular atrophy type 1.

Manwar says: “There’s a lot that we do for her – she needs 24-hour monitoring. She needs regular suctioning, every time she goes to sleep she’s got to wear a mask, we monitor her oxygen levels and heart rate, there’s a lot of equipment needed. She’s got a weak swallow so she is peg fed. She hasn’t got much head control. I’m not sure if she will be able to walk in the future – only time will tell.

“In the first year of her life she was in hospital in Sheffield on an ICU ventilator four times, we were there for 13 weeks on one visit. She’s had a better year this last year. We’ve had some very scary moments – one minute you think she’s fine and then the next minute she deteriorates very quickly.

“I used to work full time but now I work part time and my wife cares for her full time. There are so many appointments, physios, speech and language team, hospital appointments, and we always have to go out with her as a couple because it’s too dangerous for her to be on her own in the back seat of the car – she needs suctioning to keep her airway open.

“It is difficult but we’re coping. She’s really bright, she brings a smile to our faces. It’s challenging at times but we get by. Carers’ Resource have been fantastic. Lucy [parent carer support worker at Carers’ Resource] has been really brilliant, she’s always there for us as a family.”