he s almost feeling like a child that doesn t have sma. he can roll, he can hold his head. i mean, honestly, it s endless, what he can do, compared to what he was doing before treatment. it s incredible. # if you see a crocodile.# the earlier a baby is given the drug, the better ideally before the symptoms start. it wasn t clear whether edward would qualify for it. the thought of actually losing him was very, very, very real. and so it makes you appreciate every single little thing every tantrum i appreciate because he can. he s got the strength to be a naughty boy, you know? and it s all those things that ijust didn t even think he would ever be able to do. spinal muscular atrophy can be detected in newborns using a simple heel prick blood test. the condition affects one in 10,000 babies. great 0rmond street is calling for all newborns to be given the test.
and so it makes you appreciate every single little thing every tantrum i appreciate because he can. he s got the strength to be a naughty boy, you know? and it s all those things that ijust didn t even think he would ever be able to do. row, row, row. spinal muscular atrophy can be detected in newborns using a simple heel prick blood test. the condition affects one in 10,000 babies. great 0rmond street is calling for all newborns to be given the test. this is three year old lena s preferred mode of travel whizzing by in the lap of her 16 year old sister, amelia. they both have sma although a different type from edward s. lena was treated as a baby with zolgensma the drug came too late for amelia. lena is our little miracle. we knew that if we give lena the drug before any symptoms, it will be the best
# if you see a crocodile. the earlier a baby is given the drug, the better ideally before the symptoms start. it wasn t clear whether edward would qualify for it. how do you describe the love for your child? especially when you ve been through something so traumatic as what we ve been through but not only that, the thought of actually losing him was very, very, very real. and so it makes you appreciate every single little thing every tantrum i appreciate because he can. he s got the strength to be a naughty boy, you know? and it s all those things that ijust didn t even think he would ever be able to do. spinal muscular atrophy can be detected in newborns using a simple heel prick blood test. the condition affects one in 10,000 babies. great 0rmond street is calling for all newborns to be given the test. if you intervene early, between 70%, 80% of these children at the age of one year will be indistinguishable from the normally
hospitals, this is where it becomes clearer. if you look at the worst hit, you mention london, great 0rmond street, the children s hospital in london, every day on average 383 staff in the week before christmas were off work because of covid i9. that was up 43% on the previous week. that is about eight to 10% of staff and great torment to that rough everyday because of covid i9. high numbers as well in sheffield, in bath, like i say, this is what health bosses have been concerned about and there were calls yesterday actually to give priority access to nhs staff or lateral flow test because there has been concerned that they have to access the test same way as the general public and there are some calls now that they should be given priority access to them so if they are self isolating because the household contact, they can get back to work more quickly they can access those tests. in scotland, wales and northern ireland, tighter rules are now in place
life threatening, it weaves parents like amanda and judd faced with a difficult decision as to whether they opt for the risks of surgery or let nature take its course, with the physical and psychological impacts that follow. it physical and psychological impacts that follow. . , physical and psychological impacts that follow. , that follow. it has been quite overwhelming, that follow. it has been quite overwhelming, hasn t - that follow. it has been quite overwhelming, hasn t it? - that follow. it has been quite i overwhelming, hasn t it? there that follow. it has been quite - overwhelming, hasn t it? there have been a lot of appointments and a lot of time away. 50. been a lot of appointments and a lot of time away- of time away. so, when offered the chance to be of time away. so, when offered the chance to be the of time away. so, when offered the chance to be the first of time away. so, when offered the chance to be the first to of time away. so, when offered the chance to