but no one actually seems to care. this is the reality of home life for 24 year old declan and his mother, alex. he has duchenne muscular dystrophy a muscle wasting condition. day and night are filled with medication, ventilator checks, physio and the care that keeps him alive. it s made, like, my chest and my lungs weak and my heart. so i have to wear. more often i have to wear my ventilator now. i m in the middle of something. they also face a constant struggle to find care staff to help. alex has been keeping a video diary for us since last october. i ve been looking after dec all day because he s still getting over pneumonia. it s been go, go, go, go, go. i m absolutely shattered. at 3:00, we had to do more chest physio. 5:00, we had to do more chest physio. 8:00, started put his neb on and then had to, um.
they also face a constant struggle to find care staff to help. alex has been keeping a video diary for us since last october. i ve been looking after dec all day because he s still getting over pneumonia. it s been go, go, go, go, go. i m absolutely shattered. at 3:00, we had to do more chest physio. 5:00, we had to do more chest physio. 8:00, started put his neb on and then had to, um. sorry, i m knackered. declan s care is paid for by the nhs under a scheme known as continuing health care. it funds him for support at nearly £19 an hour, but his mum says it can cost up to £80 an hour for the skilled nursing care he increasingly needs. and with a fixed budget, it means they get fewer hours of help. at times, alex has gone 60
it s been go, go, go, go, go. i m absolutely shattered. at 3:00, we had to do more chest physio. 5:00, we had to do more chest physio. 8:00, started put his neb on and then had to, um. sorry, i m knackered. declan s care is paid for by the nhs under a scheme known as continuing health care. it funds him for support at nearly £19 an hour, but his mum says it can cost up to £80 an hour for the skilled nursing care he increasingly needs. and with a fixed budget, it means they get fewer hours of help. at times, alex has gone 60 hours without sleep. i ve now got to do the rest of the night, get declan up in the morning. then i m going to have to look after declan all day tomorrow. you have to do it yourself, to the point they ve had me where i ve ended up saying, ok, you win, you re going to have to put
echt and even cases far more complicated in this case. and it is a kaf law goe end up there in the nkted documents and in the course of the government trying to get them back, did the sflee it is not that kind floecht and a number of documents involved, buttis ex months if neb is working sgrejt and it is going to be a great deal of time. thank you, david.