0:00:02 > 0:00:05Wrexham Maelor, home to one of the busiest children's wards in Wales.
0:00:09 > 0:00:13Last year, it treated over 5,000 children.
0:00:13 > 0:00:16You get so much satisfaction from these kids.
0:00:16 > 0:00:17They're little soldiers,
0:00:17 > 0:00:19and they really do carry on playing and smiling,
0:00:19 > 0:00:21even though they're not well.
0:00:21 > 0:00:25Some of them have to be here, or they would die.
0:00:25 > 0:00:28She's not been outside the cube.
0:00:28 > 0:00:29She hasn't been outside here, so...
0:00:29 > 0:00:32You'd love to be able to take her out in the fresh air
0:00:32 > 0:00:34and just have a little walk around with her,
0:00:34 > 0:00:36but that's not been possible.
0:00:36 > 0:00:40Others leave in ambulances, destined for specialist care...
0:00:42 > 0:00:45..but both staff and patients all share a common goal...
0:00:46 > 0:00:50I think I'll bawl my eyes out when she walks out of here.
0:00:50 > 0:00:53Just to see her walk and stand and not be terrified and fall over.
0:00:54 > 0:00:57..to one day go home.
0:01:06 > 0:01:10Most children who visit Wrexham Maelor do go home.
0:01:10 > 0:01:13You're not having physio any more, are you?
0:01:13 > 0:01:15Harry wanted to say thank you.
0:01:15 > 0:01:16- Oh, OK.- He's made a card.
0:01:16 > 0:01:19Oh, diolch yn fawr iawn!
0:01:19 > 0:01:20Thank you very much.
0:01:20 > 0:01:24..but there's one very special lady who's never been home.
0:01:24 > 0:01:27You didn't taste that. A little bit more.
0:01:27 > 0:01:29Om-nom-nom, is that nice?
0:01:29 > 0:01:31Is that nice?
0:01:31 > 0:01:3518-month-old Lily, who has Down's syndrome,
0:01:35 > 0:01:38has been in hospital since the day she was born.
0:01:38 > 0:01:41She was sleeping when we first got here this morning.
0:01:41 > 0:01:45She's been awake since 6:15, but she'd gone back to sleep,
0:01:45 > 0:01:47and as soon as she gets up, she's like this, isn't she?
0:01:47 > 0:01:48She's just a smiler.
0:01:50 > 0:01:53It is obviously a very unusual situation
0:01:53 > 0:01:56for somebody to be the age Lily is now,
0:01:56 > 0:01:58she's coming up for 18 months,
0:01:58 > 0:02:01and to not yet have been home.
0:02:01 > 0:02:03Babum, babum, babum, babum.
0:02:03 > 0:02:05At the moment, Lily's got a little infection
0:02:05 > 0:02:09and so we have to take some extra precautions,
0:02:09 > 0:02:10and what that means, unfortunately,
0:02:10 > 0:02:12is we have to put an apron and a pair of gloves on,
0:02:12 > 0:02:14which isn't the nicest thing,
0:02:14 > 0:02:17but hopefully it's not going to be forever.
0:02:17 > 0:02:18Right, let's go in.
0:02:19 > 0:02:22Hello, there. Hello, Lily.
0:02:22 > 0:02:24In a nutshell, what you would say
0:02:24 > 0:02:28is that she has a couple of problems relating to her heart.
0:02:28 > 0:02:31One of which is that she has an unusual situation
0:02:31 > 0:02:35where you have raised blood pressure in your lungs,
0:02:35 > 0:02:37not the conventional type of raised blood pressure
0:02:37 > 0:02:40which is much more common, but one which affects the lungs
0:02:40 > 0:02:43and makes it very hard for the oxygen to go from the lungs
0:02:43 > 0:02:45into the circulation.
0:02:46 > 0:02:48You hold on to that.
0:02:50 > 0:02:51Now I'll have a little listen.
0:02:51 > 0:02:53There we go.
0:02:53 > 0:02:55And she has a second problem with her heart, as well,
0:02:55 > 0:02:58which is to do with the structure of her heart -
0:02:58 > 0:03:03because not only is it hard for the oxygen to get into her bloodstream,
0:03:03 > 0:03:06it's then very hard for that blood to get back to the heart
0:03:06 > 0:03:09to be circulated to the rest of the body.
0:03:09 > 0:03:12The only way to get enough oxygen to Lily's blood
0:03:12 > 0:03:16is through a permanent connection to the hospital's oxygen supply.
0:03:16 > 0:03:18Without it, she will die.
0:03:19 > 0:03:23It is sad when you hear Lily's story, and, um...
0:03:25 > 0:03:28Yeah, it is hard not to get attached but you do...
0:03:28 > 0:03:31Like I say, we all support each other and you do...
0:03:32 > 0:03:35..you do sort of deal with these things,
0:03:35 > 0:03:39and, yeah, do your best for her, at the end of the day.
0:03:41 > 0:03:46How on earth could any child be playful and settled with all that?
0:03:46 > 0:03:50But of course that's all she's ever known, really, so...
0:03:50 > 0:03:54Children rapidly become accustomed to what's always been there.
0:03:57 > 0:04:00Lily is just a special little girl,
0:04:00 > 0:04:04with a lot of complex needs but she's just a beautiful little girl.
0:04:04 > 0:04:06She's a character.
0:04:06 > 0:04:08She just absolutely draws you in.
0:04:08 > 0:04:10It doesn't matter if it's staff
0:04:10 > 0:04:14or whether it's a domestic that's just passing,
0:04:14 > 0:04:16she's just got a smile for everybody.
0:04:16 > 0:04:18She's absolutely beautiful.
0:04:18 > 0:04:19She's a special little girl.
0:04:27 > 0:04:3010-year-old Mollie has only been in hospital four days.
0:04:32 > 0:04:39Mollie's gone from performing in her dance festival with her dance team
0:04:39 > 0:04:42to not being able to sit up on her own or walk.
0:04:43 > 0:04:47So, very drastic, in relation to what she can do.
0:04:47 > 0:04:51A week ago, she was pirouetting her way through a dance competition,
0:04:51 > 0:04:54but, soon after, she started feeling ill.
0:04:54 > 0:04:59I felt really rough and really dizzy, pain.
0:04:59 > 0:05:01Couldn't get out of bed.
0:05:01 > 0:05:05We went to the hospital again,
0:05:05 > 0:05:13with the doctors and... they said they thought it was...
0:05:13 > 0:05:14What was it?
0:05:14 > 0:05:17- Something to do with your balance or something, didn't they?- Yeah.
0:05:17 > 0:05:20- That you needed to go to hospital. - Yeah.
0:05:20 > 0:05:23Such a massive drastic difference in a child.
0:05:23 > 0:05:27Nothing sinister has appeared in Mollie's blood tests.
0:05:27 > 0:05:30All life-threatening conditions have been ruled out.
0:05:30 > 0:05:32Just keep pushing against the pillow.
0:05:32 > 0:05:33Doctors are baffled,
0:05:33 > 0:05:36but they think Mollie's illness
0:05:36 > 0:05:38is most likely due to a very nasty virus.
0:05:38 > 0:05:39- ..and do it together.- Yeah.- Yeah?
0:05:39 > 0:05:42Ow. Mummy, Mummy!
0:05:42 > 0:05:44- Put me down. - All right, all right, OK, OK, OK.
0:05:44 > 0:05:47In, done. All done.
0:05:47 > 0:05:49- No more.- No more.
0:05:50 > 0:05:52Colds are very, very common,
0:05:52 > 0:05:54but if you think about viral illnesses,
0:05:54 > 0:05:57if you have flu as an acute thing, you know, your head hurts,
0:05:57 > 0:06:00your teeth hurt, your nose hurt, your joints hurt.
0:06:00 > 0:06:02You know, your whole body feels lousy
0:06:02 > 0:06:04and with viral infections, you can get that,
0:06:04 > 0:06:07and you may get, when the initial illness has passed,
0:06:07 > 0:06:10you are still feeling a part of your body is not right,
0:06:10 > 0:06:13is not working properly, and that's all very common for all of us,
0:06:13 > 0:06:17but then viral infections can affect the organs of balance,
0:06:17 > 0:06:20they can have a widespread effect on the body.
0:06:20 > 0:06:23Mollie's been told there's no quick fix.
0:06:23 > 0:06:24This is going to take time...
0:06:25 > 0:06:29..but for baby Noah, time is of the essence.
0:06:31 > 0:06:35He went from being this happy, content, very alert little boy
0:06:35 > 0:06:37to...nothing.
0:06:37 > 0:06:38And I just...
0:06:38 > 0:06:40I can't get my head around how quick it happened, really.
0:06:40 > 0:06:43His hands were blue, his feet were blue.
0:06:43 > 0:06:45He was really cold, and...
0:06:45 > 0:06:46..he just wouldn't do anything.
0:06:46 > 0:06:48Basically, his eyes were closed and he was just breathing,
0:06:48 > 0:06:50that was all he was doing.
0:06:52 > 0:06:55Initially we were thinking that the problem was
0:06:55 > 0:06:57that he had a hormone deficiency.
0:06:57 > 0:06:58The one we worry about
0:06:58 > 0:07:01is something called a congenital adrenal hyperplasia,
0:07:01 > 0:07:05which is a very rare but recognised cause of collapse in a newborn -
0:07:05 > 0:07:08however, one of the other causes of this
0:07:08 > 0:07:11is a thing called posterior urethral valve syndrome,
0:07:11 > 0:07:14where the pipes that let the urine drain from the kidney
0:07:14 > 0:07:15into the bladder,
0:07:15 > 0:07:19and then from the bladder into the outside world, are blocked.
0:07:19 > 0:07:22Doctors immediately catheterised Noah,
0:07:22 > 0:07:25thus allowing the urine to leave his bladder.
0:07:25 > 0:07:28The procedure saved his life.
0:07:28 > 0:07:31- Yeah.- So, when do we have to feed him next?
0:07:31 > 0:07:32Well, what Jenna said,
0:07:32 > 0:07:36that she's going to try and keep him on three hourly at the moment,
0:07:36 > 0:07:38just to see if that pacifies him.
0:07:38 > 0:07:40If he takes a really good feed in three hours,
0:07:40 > 0:07:44- then we could try getting him off this.- Right, OK.- Fingers crossed.
0:07:44 > 0:07:47The scary thought was, if we didn't get him here in time,
0:07:47 > 0:07:50the doctor said if we'd left it another 6-12 hours
0:07:50 > 0:07:53and thought, you know, he's just under the weather...
0:07:53 > 0:07:54He could've been a lot worse.
0:07:54 > 0:07:56He would have been dead, basically.
0:07:58 > 0:08:01Lily, the little girl who has never left hospital,
0:08:01 > 0:08:05who is fed through a tube, has yet again pulled out the tube.
0:08:05 > 0:08:08What have you got there? You don't like that, really, do you?
0:08:08 > 0:08:10No, you don't! No, you don't.
0:08:10 > 0:08:13So, Lily has pulled her own tube out today.
0:08:13 > 0:08:17They do need re-passing every week to four weeks,
0:08:17 > 0:08:20but Lily gets her little fingers under sometimes
0:08:20 > 0:08:21and does pull them out,
0:08:21 > 0:08:23so that's what's happened today.
0:08:23 > 0:08:27So, to know whereabouts it goes in the stomach, you need to measure.
0:08:27 > 0:08:28Because Lily's had one before,
0:08:28 > 0:08:32we sort of know what length she usually has it at, about 27.
0:08:32 > 0:08:34She doesn't like it very much.
0:08:34 > 0:08:37- Because she will get a bit upset now when this happens.- Yeah.
0:08:37 > 0:08:38She will cry.
0:08:38 > 0:08:40- Lily CRIES - OK, OK.- Good, girl.- OK.
0:08:40 > 0:08:43- Good girl.- OK, darling. All right.
0:08:43 > 0:08:46- It's OK.- Almost there.- It's OK. - There you go!
0:08:47 > 0:08:50- And you're all done. - So, it was as quick as that.
0:08:50 > 0:08:52- Finished!- All done!
0:08:52 > 0:08:54- You can have a cuddle now. - Come on, then.
0:08:54 > 0:08:57- SHE CRIES - I know, that wasn't nice, was it?
0:08:57 > 0:08:58- No.- But it's gone now.
0:08:58 > 0:09:00Let's take that off. It's gone now.
0:09:00 > 0:09:02See, I'm all done now!
0:09:02 > 0:09:04- I'm all done now!- Finished now!
0:09:04 > 0:09:06She's thinking, "There's no more, is there?"
0:09:06 > 0:09:08No! No more.
0:09:10 > 0:09:13For Lily, her nurses have become her family.
0:09:13 > 0:09:18Living in a hospital has turned her real family into visitors.
0:09:22 > 0:09:25She's our baby. She's...
0:09:25 > 0:09:26She's just fabulous.
0:09:30 > 0:09:33Now and then I'll have, like, a down day,
0:09:33 > 0:09:35like, at first I was struggling,
0:09:35 > 0:09:37I didn't know, you know, what to do with her.
0:09:37 > 0:09:40I didn't know what they were going to say.
0:09:40 > 0:09:44Now, she's...she's come on, better than she was.
0:09:47 > 0:09:48Oh, wow.
0:09:49 > 0:09:50Aww!
0:09:51 > 0:09:53Snow White.
0:09:54 > 0:09:56She's gathered up quite a collection
0:09:56 > 0:10:01of toys and clothes and bits and pieces, you know,
0:10:01 > 0:10:03everybody is so generous with her.
0:10:03 > 0:10:05As you can see from the room -
0:10:05 > 0:10:08this is all the nurses and the play staff.
0:10:08 > 0:10:11You know, her room is beginning to look like a...
0:10:11 > 0:10:14I don't know, a Disney wonderland.
0:10:14 > 0:10:16She can be a little madam when she wants to be.
0:10:17 > 0:10:20- But...- So, who does she take after?
0:10:22 > 0:10:24She takes after the wife.
0:10:24 > 0:10:26Thank you!
0:10:26 > 0:10:29Because you... When you are on an off day, you can be as naggy as her.
0:10:29 > 0:10:31- Everybody can, can't they? - You know.- Yeah.
0:10:31 > 0:10:35When you're not well, you don't want to be messed with.
0:10:35 > 0:10:39You know, you just want to be left alone, sleep,
0:10:39 > 0:10:41and get yourself sorted.
0:10:41 > 0:10:42Lily CRIES
0:10:42 > 0:10:43Oh...!
0:10:46 > 0:10:47Rarrr!
0:10:48 > 0:10:50Mwah!
0:10:50 > 0:10:52Yeah, she's got a scrapbook.
0:10:52 > 0:10:54Um...
0:10:54 > 0:10:57Like, her own...
0:10:57 > 0:10:58Put a picture of Lily on there,
0:10:58 > 0:11:04but we've made loads of, like...
0:11:05 > 0:11:08There's one, of chalk...
0:11:08 > 0:11:10Um...
0:11:10 > 0:11:13What else has she done?
0:11:13 > 0:11:16One of her hands, which look like ghosts.
0:11:19 > 0:11:22Then they did, like, her hands for a flower.
0:11:22 > 0:11:24- Oh, that's nice. - So, they done, like, her fingers.
0:11:26 > 0:11:28- Um...- So, you might have an artist?
0:11:28 > 0:11:30Yeah!
0:11:31 > 0:11:34In an ideal world, what we want is her at home.
0:11:35 > 0:11:37That is all we want.
0:11:37 > 0:11:39Ideal world, all we want is for her to come home...
0:11:41 > 0:11:44..and this is what we're working towards.
0:11:44 > 0:11:48Trying to get her back home with the rest of the family.
0:11:49 > 0:11:52As long as her oxygen levels come down,
0:11:52 > 0:11:55and she goes back onto normal oxygen, she can come home.
0:11:57 > 0:11:58But that's never going to happen.
0:12:02 > 0:12:04Shortly after that visit,
0:12:04 > 0:12:07the family was told that Lily was never going to get any better.
0:12:08 > 0:12:12Unfortunately, the heart condition she does have
0:12:12 > 0:12:15are not what we would call static.
0:12:15 > 0:12:19In other words, they will actually progress, sadly,
0:12:19 > 0:12:22and we have explored with specialists
0:12:22 > 0:12:25all possible treatment options,
0:12:25 > 0:12:29and, sadly, the consensus is that there are no treatments
0:12:29 > 0:12:33which are going to prevent this progressing.
0:12:33 > 0:12:36She is on treatments which will slow that progression,
0:12:36 > 0:12:40but they will only slow it, not actually reverse it or cure it.
0:12:40 > 0:12:46So, sadly that will ultimately lead to her having a shorter life span
0:12:46 > 0:12:49than even other children with Down's syndrome.
0:12:57 > 0:12:58I was in on the meeting
0:12:58 > 0:13:01with our doctors and the cardiology team...
0:13:02 > 0:13:04..when they were telling Mum
0:13:04 > 0:13:07about this life limit and how bad her heart and lungs were,
0:13:07 > 0:13:10and it was really, really difficult, you know,
0:13:10 > 0:13:13not to cry in front of the doctors and Mum -
0:13:13 > 0:13:15but we're all human after all.
0:13:15 > 0:13:17You know, as soon as I got out of that meeting,
0:13:17 > 0:13:18I just broke down crying.
0:13:18 > 0:13:20It's heartbreaking, but...
0:13:20 > 0:13:23..we've just got to give her the best that we can while she's here.
0:13:24 > 0:13:26A few days later,
0:13:26 > 0:13:30a charity specialising in taking photos of terminally ill children
0:13:30 > 0:13:33organises a photoshoot for Lily's mum and dad...
0:13:43 > 0:13:44I can't tell you that, sorry.
0:13:48 > 0:13:51That's something the doctor will have to speak to you about first
0:13:51 > 0:13:52before I say it.
0:13:54 > 0:13:56It's always something for the families to cherish,
0:13:56 > 0:13:58there's nothing that beats a photo album.
0:13:58 > 0:14:00There's nothing at all that's as precious
0:14:00 > 0:14:03as being able to look back through all those memories in years to come.
0:14:06 > 0:14:11..but despite the devastating news, mum Louise has not given up.
0:14:15 > 0:14:17- Yeah.- Yeah?
0:14:17 > 0:14:24Yeah, we've set up all her bedroom so it's all princessy, now, for her.
0:14:24 > 0:14:28We've got some photos to do, haven't we, Lily?
0:14:28 > 0:14:30You're looking pretty today.
0:14:33 > 0:14:36For baby Noah, who has kidney failure,
0:14:36 > 0:14:39events have taken a dramatic turn.
0:14:39 > 0:14:41Alder Hey Children's Hospital
0:14:41 > 0:14:45have requested that he be transferred immediately.
0:14:45 > 0:14:48- While you were at lunch, we've got an ambulance...- Mm-hm.
0:14:48 > 0:14:49..ambulance here,
0:14:49 > 0:14:52so you guys are going to go to Liverpool in the next few minutes.
0:14:52 > 0:14:53Right, OK.
0:14:53 > 0:14:54With the surgery, obviously,
0:14:54 > 0:14:57- I don't think they'll do the surgery today...- Yeah.
0:14:57 > 0:14:59..and the important thing is to do some further tests,
0:14:59 > 0:15:02have a look at Noah's kidneys...
0:15:02 > 0:15:06- Mm-hm.- ..and then they'll do the surgery,
0:15:06 > 0:15:08sort of, at an appropriate time.
0:15:08 > 0:15:11- OK.- The good news is that his numbers are just getting better.
0:15:11 > 0:15:15- Yeah.- They're getting better, and his kidney function's improving.
0:15:15 > 0:15:16That's the important thing.
0:15:16 > 0:15:19So, right - so, that's it.
0:15:22 > 0:15:25Alder Hey will find out exactly what it is
0:15:25 > 0:15:27that is blocking Noah's kidneys,
0:15:27 > 0:15:29and then remove the obstruction.
0:15:35 > 0:15:38There we are, little boy.
0:15:38 > 0:15:40- Are you ready for him?- Yeah.
0:15:44 > 0:15:45Bye, little man!
0:15:49 > 0:15:52Wrexham Maelor has saved his life,
0:15:52 > 0:15:56but they don't have the expertise to perform the operation.
0:15:56 > 0:16:01So, Noah will now have to go 60 miles up the motorway to Liverpool.
0:16:10 > 0:16:12Do you need anything?
0:16:12 > 0:16:14- No, I've got everything here. - Yeah?- Yeah.
0:16:14 > 0:16:15You know where you're going?
0:16:15 > 0:16:18- Yeah, well, the ambulance does, so I'll follow them.- All right, OK!
0:16:43 > 0:16:46The Geeks, a local award-winning dance group,
0:16:46 > 0:16:49have decided to pay their team member a visit.
0:16:50 > 0:16:54Two weeks ago, Mollie was competing with them.
0:16:54 > 0:16:57Now, the mere thought of standing up makes her dizzy.
0:16:57 > 0:16:59I've never seen her lay down so much.
0:16:59 > 0:17:02I've never seen her sit still - she's never sat still.
0:17:02 > 0:17:04She was walking at, like, ten months.
0:17:04 > 0:17:06So, whatever it is, it's got a lot of power -
0:17:06 > 0:17:09we need to sort of take the power off and give it back to her, really.
0:17:09 > 0:17:12So, in an effort to lift her spirits,
0:17:12 > 0:17:15the Geeks are putting on a show in the ward's playroom.
0:17:18 > 0:17:19MUSIC PLAYS
0:17:22 > 0:17:25# All the time We do it all the time
0:17:25 > 0:17:28# We do it all the time We do it all the time... #
0:17:42 > 0:17:45I think I'll bawl my eyes out when she walks out of here.
0:17:46 > 0:17:49Just to see her walk and stand and not be terrified and fall over
0:17:49 > 0:17:51like she has when she's tried.
0:17:52 > 0:17:58I feel the lottery will be nothing to watching her dance again.
0:17:58 > 0:18:02I want to sit there and watch her be happy and enjoy her friends.
0:18:02 > 0:18:05She said to me earlier when I came in, she was really down.
0:18:05 > 0:18:07She said she felt sad.
0:18:07 > 0:18:08I said, "Why do you feel sad?"
0:18:08 > 0:18:11She said, "Because I'm missing all my friends."
0:18:11 > 0:18:13ALL CLAP AND CHEER
0:18:15 > 0:18:17Picture, girls.
0:18:17 > 0:18:18This is the before,
0:18:18 > 0:18:21and then the after one will be of you standing, won't it?
0:18:21 > 0:18:23- ALL:- Yes!- Yeah?- Yes.- Yeah?
0:18:23 > 0:18:24Or dancing with them.
0:18:24 > 0:18:26Yeah! One, two, three.
0:18:26 > 0:18:28- ALL:- Geeks rule!
0:18:28 > 0:18:30Mollie, you didn't say it very loudly!
0:18:30 > 0:18:31LAUGHTER
0:18:33 > 0:18:38Lily's friends are the staff that work on the children's ward.
0:18:38 > 0:18:39Come on, then! On here.
0:18:39 > 0:18:41Ready? Ready?
0:18:41 > 0:18:43Do you want some purple?
0:18:45 > 0:18:48Good job it's safe for children, because she's going to eat...
0:18:48 > 0:18:49No, no, no!
0:18:51 > 0:18:52No, you don't want in your mouth!
0:18:52 > 0:18:55Lily probably can't tell the difference
0:18:55 > 0:18:59between the staff and her family in some ways,
0:18:59 > 0:19:01because the family are doing a very good job, obviously,
0:19:01 > 0:19:05of spending as much time as they can here in the hospital,
0:19:05 > 0:19:07but, probably, Lily sees the staff here,
0:19:07 > 0:19:10the medical staff, the nursing staff,
0:19:10 > 0:19:11as much as she sees the others,
0:19:11 > 0:19:14and probably, from her perspective,
0:19:14 > 0:19:19she possibly doesn't understand that we're not all the same.
0:19:19 > 0:19:21You're going to have orange hair, right? OK.
0:19:23 > 0:19:25Does it feel nice?
0:19:25 > 0:19:27There you are - and again.
0:19:27 > 0:19:30We love to be around her, we just love being around her.
0:19:30 > 0:19:31When you're there -
0:19:31 > 0:19:33I don't know if you've seen it when you've been filming -
0:19:33 > 0:19:35people just come in the cube
0:19:35 > 0:19:37and just want to hug her and play with her.
0:19:37 > 0:19:39It's not so much that we're a family,
0:19:39 > 0:19:42but we're all connected to her, that's for sure.
0:19:46 > 0:19:50Having Lily on the ward is lovely, and it's lovely to look after her,
0:19:50 > 0:19:52it's lovely to see her every day -
0:19:52 > 0:19:54but it is hard...
0:19:54 > 0:19:59..emotionally, really. It's hard, now I've got seven days off,
0:19:59 > 0:20:01I know I'm going to miss her and wonder how she is,
0:20:01 > 0:20:05and I'm sure I'll send the odd text checking up on her.
0:20:05 > 0:20:08Last one. On that side.
0:20:08 > 0:20:10On that side.
0:20:11 > 0:20:13She knows what she's doing!
0:20:14 > 0:20:16OK, do you want a bit more, then?
0:20:16 > 0:20:18If a child is going to have a shorter life,
0:20:18 > 0:20:21then you obviously have to try and fit as much
0:20:21 > 0:20:22into that life as you can.
0:20:22 > 0:20:25Sometimes you have to make decisions about the health care
0:20:25 > 0:20:27which allow you to do something
0:20:27 > 0:20:31which would hopefully add to that child's enjoyment of life,
0:20:31 > 0:20:33but which, if you were dealing with something curable,
0:20:33 > 0:20:34you wouldn't do that,
0:20:34 > 0:20:37you'd get on with the treatment and leave all of that till later,
0:20:37 > 0:20:40and perhaps, for Lily, there won't be a later.
0:20:40 > 0:20:44Lily! Oh, blooming heck, I think it's bath time!
0:20:45 > 0:20:49It makes us happy, it's nice to see her like this.
0:20:49 > 0:20:51This is normality for children.
0:20:51 > 0:20:55In school, they do all this - in playschools and things.
0:20:55 > 0:20:58- This is lovely, we love doing it, don't we?- We do, yeah.
0:20:58 > 0:21:01She's happy - and you've seen it for yourself.
0:21:01 > 0:21:05She just wants to eat it, and paint yourself, as well.
0:21:05 > 0:21:09No, it's nice, it does put a smile on your face, doesn't it?
0:21:09 > 0:21:11SHE LAUGHS
0:21:11 > 0:21:13I'm not sure a lot of people would agree with that!
0:21:13 > 0:21:14Look at your face.
0:21:15 > 0:21:17She is thinking, "What have I done?"
0:21:18 > 0:21:19Oh, look at her!
0:21:19 > 0:21:22- THEY LAUGH - Right, OK.
0:21:22 > 0:21:25After ten days in hospital,
0:21:25 > 0:21:28Mollie's no closer to a definitive diagnosis.
0:21:28 > 0:21:30She's still wheelchair-bound,
0:21:30 > 0:21:32and all dad can do is stand back and watch...
0:21:32 > 0:21:35I'll hold your pillow and it'll support your neck.
0:21:35 > 0:21:38- I'm only doing a tiny bit, I'm not...- Yeah, you try your best.
0:21:38 > 0:21:40Can you push yourself up?
0:21:40 > 0:21:42No.
0:21:42 > 0:21:45You've got to push yourself up with this hand, as well.
0:21:53 > 0:21:55You were really close then. Shall we try again?
0:21:55 > 0:21:58- If you squidge your bum in...- Why?
0:21:58 > 0:22:01No, I'm still on here, it's not working.
0:22:01 > 0:22:02You lift up a little bit, then,
0:22:02 > 0:22:05and I'll lift your pillow up with you.
0:22:08 > 0:22:10No?
0:22:11 > 0:22:13..but progress is being made, slowly.
0:22:16 > 0:22:18- Well done, Mollie.- Well done.
0:22:18 > 0:22:20- Push this chair back.- Yeah.
0:22:21 > 0:22:23Mollie, want to go for a walk?
0:22:24 > 0:22:26No? Maybe tomorrow.
0:22:26 > 0:22:29- Tonight?- Tonight? We're going to go for it, are we?
0:22:29 > 0:22:31Brilliant, I'll take that.
0:22:31 > 0:22:33You're teasing me.
0:22:33 > 0:22:36Are we definitely going to try and walk today?
0:22:37 > 0:22:39- Yeah.- Yeah?- Go on!
0:22:39 > 0:22:42- Walk?- Walk. OK.
0:22:42 > 0:22:44- With no help. - But you can't have the pillow.
0:22:44 > 0:22:45You've still got the pillow, though.
0:22:45 > 0:22:47So, tomorrow, when I come in, in the morning,
0:22:47 > 0:22:49I'm going to find out how you got on.
0:22:51 > 0:22:52OK.
0:22:55 > 0:22:58And Mollie isn't the only one who's about to go for a walk.
0:23:02 > 0:23:04For the first time in her life,
0:23:04 > 0:23:09Lily's oxygen levels are stable enough to do something very special.
0:23:09 > 0:23:12- What do you think of...- Her feet!
0:23:12 > 0:23:14I don't know if this even fits you properly.
0:23:14 > 0:23:16- Yeah, it does.- Are you ready?
0:23:16 > 0:23:19- Gorgeous.- Are we going for a walk?
0:23:19 > 0:23:22- GASPS:- Shall we go outside?
0:23:22 > 0:23:24What do you say?
0:23:24 > 0:23:27Yeah, shall we go outside?
0:23:27 > 0:23:29Does that sound like a good idea?
0:23:29 > 0:23:33Come here, then, monster.
0:23:33 > 0:23:34Ooh...
0:23:34 > 0:23:36Oh, you're getting heavier by the day.
0:23:38 > 0:23:40She's been on aero for months, now,
0:23:40 > 0:23:43so she's been restricted to her cubicle.
0:23:43 > 0:23:46So, we just managed to get her off it today,
0:23:46 > 0:23:49because we want her to have different experiences,
0:23:49 > 0:23:51and we thought we'd take her outside
0:23:51 > 0:23:53so she can have a bit of fresh air, can't you?
0:23:53 > 0:23:57This will be the first time Lily has ever been outside.
0:23:57 > 0:23:59Have you got your blankets, as well, so you're nice and cosy?
0:24:07 > 0:24:09She's looking at the different lights!
0:24:12 > 0:24:13Come on, then.
0:24:13 > 0:24:15Done that, have you?
0:24:17 > 0:24:19What is it, hey? What's all this?
0:24:22 > 0:24:25Where are we going?
0:24:26 > 0:24:27It's raining, it's pouring!
0:24:27 > 0:24:30Lovely, thank you very much.
0:24:32 > 0:24:33Thank you.
0:24:35 > 0:24:37What's that?
0:24:37 > 0:24:38Is that fresh air?
0:24:38 > 0:24:39Look at her face!
0:24:41 > 0:24:42Is that fresh air?
0:24:42 > 0:24:44Does it feel nice?
0:24:44 > 0:24:47Gorgeous girl, aren't you?
0:24:49 > 0:24:50How does that feel, Lils?
0:24:52 > 0:24:54- THEY LAUGH - Aw, got a bit of a smile!
0:24:54 > 0:24:55Yeah!
0:24:59 > 0:25:00Is it really bright?
0:25:01 > 0:25:04- Wow.- How does it feel to be doing this?
0:25:04 > 0:25:07I don't know, it's a big landmark, really, for her.
0:25:07 > 0:25:09A bit emotional, I suppose...
0:25:11 > 0:25:12..but, yeah.
0:25:12 > 0:25:13Sorry...
0:25:16 > 0:25:17SHE SOBS
0:25:21 > 0:25:24It's just nice that we can do this for her.
0:25:24 > 0:25:25Bless.
0:25:26 > 0:25:28You all right?
0:25:30 > 0:25:33You become one of their family in a way.
0:25:33 > 0:25:34She's been here for so long.
0:25:36 > 0:25:41Oh! Look what you've gone and made me do, eh?
0:25:41 > 0:25:42You're just too cute, aren't you?
0:25:43 > 0:25:45Yeah.
0:25:45 > 0:25:48I got a message just to say that she'd been outside with Katie.
0:25:48 > 0:25:50Oh, gosh.
0:25:50 > 0:25:52It was... It was unreal.
0:25:52 > 0:25:54It was lovely, I actually cried.
0:25:54 > 0:25:58I was just so happy to think she'd actually gone outside.
0:25:58 > 0:26:00It was raining that day - it was so lovely,
0:26:00 > 0:26:02because it wasn't heavy rain,
0:26:02 > 0:26:03but she seemed to, like, be blinking,
0:26:03 > 0:26:05because the rain was falling on her face.
0:26:05 > 0:26:07Oh, my God, it was lovely.
0:26:07 > 0:26:09I'm sorry.
0:26:09 > 0:26:11There you go, darling.
0:26:11 > 0:26:12Good girl.
0:26:12 > 0:26:16Was that nice? Shall we go inside now and get nice and toasty?
0:26:16 > 0:26:17Lily's first adventure.
0:26:17 > 0:26:18Yeah!
0:26:21 > 0:26:25After a weekend at home, Mollie is finally walking...
0:26:28 > 0:26:31I'm just so glad to see her on her feet, that is amazing.
0:26:31 > 0:26:33That positivity -
0:26:33 > 0:26:37that you can do it, and facing your fears when it is so scary.
0:26:37 > 0:26:38- Keep strong.- We will.
0:26:38 > 0:26:41- Thanks very much.- Take care. - Cheers. Thanks, bye.
0:26:41 > 0:26:43Disappointingly,
0:26:43 > 0:26:46I don't think there's always answers to every single thing,
0:26:46 > 0:26:48but I think it's how you go about trying.
0:26:57 > 0:27:02..and, after going out once, Lily is out again -
0:27:02 > 0:27:03this time with her family.
0:27:06 > 0:27:09Hello! Say hello!
0:27:09 > 0:27:11Oh, she says, "It's so bright."
0:27:11 > 0:27:13THEY LAUGH
0:27:13 > 0:27:16"If you get close to this, I'm going to have that," she says.
0:27:16 > 0:27:18"If you get too close to me, I'm going to have that."
0:27:19 > 0:27:22With the sun coming out a little bit this afternoon,
0:27:22 > 0:27:25we thought we'd take her out again, which was lovely -
0:27:25 > 0:27:27and Nana and Grandad have actually come with us,
0:27:27 > 0:27:31so they've actually seen her going out for the first time in her pram.
0:27:34 > 0:27:38So, she's all ready for bed now, she's got her nice jammies on,
0:27:38 > 0:27:40and you're going to sleep in a bit, aren't you?
0:27:40 > 0:27:42Yes, you are.
0:27:42 > 0:27:44You're going to bobbles now.
0:27:45 > 0:27:47She knows what bobbles is!
0:27:47 > 0:27:49Are you ready? You going to go bobbles now?
0:27:49 > 0:27:51Shall we go to sleep?
0:27:51 > 0:27:52There we are, that's bobbles.
0:27:52 > 0:27:54And again!
0:27:54 > 0:27:55Bobbles!
0:27:55 > 0:27:56Bobbles.
0:27:59 > 0:28:00What do you want for Lily?
0:28:01 > 0:28:03A miracle.
0:28:03 > 0:28:05Say night-night.
0:28:05 > 0:28:07Night-night. Night-night.
0:28:07 > 0:28:09Night-night. Blow kisses. Blow kisses.
0:28:09 > 0:28:11Aw, are you tired?
0:28:11 > 0:28:14Come on, then. Come on, then.
0:28:14 > 0:28:15There you are!
0:28:15 > 0:28:17She's funny, isn't she?