THE CHALLENGE - My Iron Man Dad

foreign [Music] David Jackson Smith is a man on a mission driven by a determination to keep his young son Harrison alive and time is short I was a relatively flabby Daddy I'd slowly over the preceding 15 years become very happy to sit on the sofa drink wine drink beer not do very much gradually put on more more weights I got up to kind of 17 and a bit of stone at one point [Music] but then my life changed I discovered that my son Harrison had an incurable disease called duchenne muscular dystrophy [Music] somewhere between his late teens and his his mid-20s um his his heart or his lungs are gonna give up on him and uh we'll lose it life isn't meant to be like this on the other hand no one has ever promised that life would be fair the hardest blow for any parent must be to watch their child die before they do these families face a number of choices and the Smiths decided that they would meet the challenge head on they would try to raise money to find a cure for the Chen Muscular Dystrophy and to do so Alex Smith would compete in an iron distance triathlon Carrie Harrison with him all the way I'm going to swim for 3.8 kilometers and then you dump out the water and again bike for 180 kilometers and then get off your bike and do the small matter of a 42.2k mouth the event itself tests human beings to the Limit men have died during the competition the later in Harrison's condition going weak and weaker has meant that I need to be strong now I must do 15 16 17 towards 20 hours a week training I needed Harrison is mindful man he's very caring outgoing is incredibly determined but he is the most stubborn boy I've ever met in my life give me a grief please just agree but that that's the smallest grape in there I know I can't believe you did that I don't think he thinks of himself as different he thinks he can do anything [Music] he will say I get to use a wheelchair occasionally as this is a benefit it means I don't have to walk it's a disabled space I can park in that space daddy that's a benefit whereas my side I look at that here well I wish I didn't have to use that space [Music] I met Donna at Oxford Brooks University in our first year it then took me the best part of five months of trying to get to be friends with her friends to get to her because she was uh she was a hard nut to crack that one really hard I had to be very persistent very very persistent my first impression of Alex was he um full of life really lots of fun I asked daughter to marry me twice as she turned me down I remember really clearly being in the car maybe two hours away from this Lodge and telling her we're gonna go and stay there anyway you're not gonna ask me to marry are you at this point I still had the the ring in my in my boxes so it was there's no chance of it being found it's like in there no it's not gonna be found it's fine um and I did it anyway and I asked her and uh she said no he says you gave me a hard time probably yeah probably but he'd spotted you straight away probably yeah I'm not a big romantic he is though we got married in Barbados in 2002 and um we're really lucky my whole family came out and got married in a beautiful restaurant called the cliff it was a beautiful day did you have a vision of what life was going to be like at that time when you yeah you want that kind of dream I guess of family kids [Music] um you know doing well nice house so I was working as a branding consultant I used to Rebrand businesses that was that was my thing I really got to the point where it was we either start having children or it's the time is just never going to be right we must go for it and um we got pregnant really quickly and it was a really special time for us I was terrified absolutely terrified the whole way through uh suddenly Harrison was there and The Midwives lifted him lift him up onto Donna's chest and cut the cord and I just absolutely cried like a baby I've never cried that hard it's just a beautiful thing and it's your first born and this is my future I've got a got a son I've got a little boy he's perfect absolutely in every way perfect in every way [Music] thank you we realized it wasn't kind of perfect in every way when probably when he was about three and a half and William my other son was a year and a half was now up and walking and running and Harrison he was up up and walking and running that it would take him longer to get up [Music] my mother-in-law Nikki she's never been crossed with me except for once when I continually said there is something wrong with Harrison's legs and as every Grandma willed he said Alex stop it he is perfect there's nothing wrong with him everything in me I knew there was something wrong I think in your gut you kind of realize that there's something not quite right but but you always put it down to oh you know he's quite he's a boy he's lazy so it wasn't really until he went to Nursery because then you're kind of assessed and they're looking at him as well and then sort of said you know he's been here a while and he's bumping into things still so it wasn't really until we had our Second Son and he's you know jumping off the floor jumping around running around and we're a bit like didn't happen the first time around so that kind of makes you start thinking hmm maybe it's not quite right something's not quite right his Montessori that he was at at the time they said look I think it's really important that you take him to see a uh some physiotherapists see if there's something wrong with um muscle delay uh go and see some ear specialists see if it's a balance issue um so we did all of that and we got signed off Physiotherapy and his ears were fine um a year had passed before we got to see a pediatric consultant and he pretty much knew straight away I went on to ask him what what what do you think it is then um and so I think it's a dystrophy and that was as far as he'd go so I think it's a dystrophy and I didn't know what it was so went home and I googled it it came up with a list of 30 odd muscular dystrophies and a lot of them are not applicable to Harrison or weren't applicable to Harrison at all but then there were two or three that there were and the awful thing about those those particularly too was that they were the worst and I I remember reading it and thinking I mean we're in trouble here and I remember not wanting to talk to Donna about it and not wanting to tell her um not wanting to to worry worry her the Shen muscular dystrophy is a killer disease that creeps up stealthily on its victims on January the 25th 2011. the doctor said I'm really sorry it's duchenne muscular dystrophy and your son's gonna die um there's nothing we can do about it now we don't have any treatments um taken away give them a good life and uh yeah my world stopped Eddie yeah yeah normal livestock that day [Music] I just hadn't [Music] prepared myself to hear to hear that didn't want to be there wanted to leave uh wanted to get home didn't really discuss it then and there I actually remember getting across with him I'm with Alex yeah not not potentially but because I was crossed that just snapped and the doctor tells you to just take them home and love them there's nothing you can do not really good enough okay [Music] we were both just numb not just completely numb not I I didn't I just didn't know what to do at all I drove to waitchoice car park a sat in waitrose pop-up to tell my mum and uh that was the time when I I cried like a baby again [Music] and you might have to be strong not to drag Donna down um but also needs to be strong for for the boys uh because you know I'm gonna Harrison's going to go through some or it is and will and is going to go through a lot of uh milestones and Journeys on his on his way and William in the same respect is going to do exactly the same he's gonna watch his his bro is basically his best mate not not do very well and life get hard for him likelihood is that he'll probably be in a wheelchair by the time he's 11 or 12. and there's no finite answer for this but somewhere between his late teens and his his mid-20s um his his heart or his lungs are gonna give up on him and uh we'll lose him you've got some kids dying age 13 and then you've got some men living with it that are 30 plus so you just hope that he's the one that goes to 30 plus you don't know really just have to keep keep them as strong as they can be for as long as they can be [Music] we know this is a a male dominant disease um there's a chance that William should be the same yeah I really thought about him with just because he they were so different [Music] um and he just didn't he was yeah I don't think it really entered my mind at that point um because he you know he was running around he was jumping he was he was seeing things that Harrison couldn't do so I don't think that entered my head until they said that they needed to test him um you must have been terrified oh God yeah yes that was worse actually even though I kind of knew that he was fine we needed a period of time just to get our heads around it and that took us about six months the pressures that were now an everyday part of their lives can split families apart and the Smith family know this absolutely and I think there are other families that it has done that too you know we talk about it sometimes but I think that's one of the other important things is that we talk about it and they're just you know very committed they've been together for such a long time and they have such a solid solid foundation that this is not something that will break them we're a type that just cling together and it's a you know it's not just a mum and a child it's the whole family I think Donna and Alex are a great great match in that they're so different in so many ways as much outgoing as Alex is Donna's you know quite quiet but she's very very strong and equally determined not to kind of downplay Alex's part in the family role I guess but she's really the engine and makes it all possible so the Smiths set out on their quest for a cure one thing that needs to be done it's raising money for research because there are no treatments and the only way we're going to get to treatments is by raising money to fund the research that gets you to a treatment or gets you to a cure in the future [Music] they met Professor K Davis quite early on at her Laboratories in Oxford Professor Davis spends her life battling against duchenne muscular dystrophy trying to find a cure or at least to Halt the march of this disease which is destroying young lives every day a DMD is a devastating muscle wasting disease where boy is usually go into a wheelchair by about the age of 12 and they essentially deteriorate during that period between 12 and 20 years of age and usually die in there sometime in their in their late 20s unfortunately there is no current treatment for this disease and so that's why it's so horribly Progressive the patients usually don't show any symptoms when they're first born and it's just horrible to watch these boys waste away so rapidly and it must be horrible for these families just to watch it so helplessly not being able to offer them anything at all [Music] thank you [Music] foreign [Music] foreign [Music] [Applause] [Music] foreign [Music] Harrison goes in front what's a William that's it we're all well held it's Daddy to William to Harrison front William we haven't told him everything said he doesn't know everything in uh his knowledge of his disease is is relatively Limited we haven't felt he was emotionally ready for it who doesn't know about being in a wheelchair full-time he doesn't know that he's got a shortered life expectancy Harrison will start the the triangle this time there's a Race Against Time because the children born now we've got to get the drugs into the clinic before they go into the wheelchairs but even even if we didn't what we would hope is that we would be able to arrest that Relentless progression of the disease so that those boys even if they were in a wheelchair can continue to use their arms could still lead a full life be employed contribute to society enjoy themselves and have a full life foreign I gave up work and focused full-time on developing Harrison's fund as a charity and driving research as fast as I could that's what I continue to do to this day Harrison's fund is is morphing all the time it's changing all the time we're starting to get to that point where we're talking to Regulators we're talking to NHS England a nice about funding the first drug for one very particular mutation of d-shaped I never thought there'd come a point where I'm uh in the House of Lords talking to to the House of Lords about what's happened to Harrison and how I feel about it the urgency I need the urgency I need the Lords and politicians and register authorities to understand where Harrison is and that every single day is is a is a bit of loss so without politicians without civil sermons without the registry authorities we have we have nothing the idea of taking Harrison on an Iron Man With Me came about occurs I came across a video that was made about um father and son called Dick and Rick Hoyt registration for the 25th Iron Man continues one by one appearing near the start line Our Father and Son dick and Ricky Rick has cerebral palsy and he wants to be able to run he asked his dad to take him through a run him [Music] he thought that Rick and I would just go to the corner and turn around and come back well we didn't we finished the whole five miles coming in next to last but not last the story just continued he went from a half mouth into a mouth into a triathlon and then end up completing an Iron Man with his son Rick and I love the Iron Man Triathlon to be out there competing with the best triathletes in the world it was just so exciting see the feeling coming down the Finish Line and leaky drive it's just an just an experience with the crowd there all the excitement the noise and the analysis announce and all the adrenaline just gets flown [Applause] that video was my Epiphany moment when I thought I could raise considerable amount of cash and then I also thought well you know this is something that Harrison will never do as as he is but I can you know I've got legs I've got arms I've got heart and lungs I've got all the things that are failing him that aren't failing me so let's give this a go [Music] an Iron Man is pretty much the toughest single day event people died you've got to swim for 3.8 kilometers alongside a thousand other people and a great big pod of swimmers and then he'd jump out of the water and again bike for 180 kilometers often up hills that I wouldn't like to walk up [Music] and then get off your bike and do the small matter of a 42.2 K Marathon half day I'm going to take Harrison on the Iron Man With Me I can give Harrison the feeling of an epic achievement [Music] I kind of looked at what dick and Rick Hoyt had done and I wanted to try and I really try and make it easier for myself to hopefully get close to Dick's record and beat his record Alex's ambition is to break the world record of 13 hours 43 minutes set by dick Hoyt when he was carrying his son you know he's got to have an outlet and that's what his Outlet is um that's his way of coping dealing with it whatever you wanna call it but that's his need that's his want that's what he wants it's not necessarily how I would deal with it first became interested in photography um at school they had photography competition and I won a few prizes but then that was it I didn't do anything until now really and what made you restart man uh kids documenting the boys and family life and keeping memories [Music] how do you cope with it um I don't know really I don't see it as coping I don't think I just it's just the way it is it's a different normal so you just have to go with the different normal like you don't have a choice [Music] [Music] [Music] there are three disciplines so the bike swim in the run and or Swim Bike Runners it's really cool I'm not good at any of them as such I didn't come into this as a swim or a bike or a runner I just decided I'm going to the Iron Man unlike other competitors in the triathlon Alex must also decide how he's going to carry his son Harrison I've got an 11 foot catamaran for Harrison to go on that is harnessed to my hips rather than my shoulders because you need the shoulders to be able to swim and I don't want anything to be restricting that the great thing about it you know a catamaran is this light in the water it only has very small footprint in the water in there it's just the two the two holes both light they don't drag and when you're pulling it from from my perspective the one thing I don't want us to have the weight to constantly jarring as it's running for the bike and the run we're using the same Contraption design purely for Harrison with racing wheelchair Wheels uh that attach to my rear axle on my bike so I'm dragging him and then when we finished the 180k on the bike it's a quick release system and you put a wheel on the front and then I push it like you would like you would a buggy you know if you've trained hard enough and you're strong enough then there's no reason why it can't be done well I don't think anyway if an Iron Man is is months and months of a long hard training um it's it's an incredibly hard thing to do and time wise it's I I must do 15 16 17 towards 20 hours a week training [Music] [Music] thank you mentally the hardest for me is the bike because it's a long time I don't particularly like cycling that much I really don't like Hills I'm not built for Hills I'm quite a big bloke the Hill's just hurt don't like it but it's necessary so I do it I enjoyed the swim the most although I'm not that great at it um I just like being in the water I just it's the easiest one for me to switch off in I don't think about anything when I'm swimming I just swim [Music] running I'm better at than I think I am uh it's just a long time to go out and run you know don't run a marathon it's yeah for when I was odd and it's uh and it's tough a lot of people in Marathon is is enough right it's uh it's a lifetime achievement but I always felt that you know the marathon you could almost turn up and blag it on the day you can't do that man you can't just turn up um you have to put the commitment in for the year more than nine months before it to get it done Alex is always up for a challenge like I was he was quite sporty but a sporty family he probably needed to get fitter it's being good in both ways because it means that he's not sitting around wallowing and thinking all the time he's actually out doing something and having a positive positive effect in two ways definitely an escape for Alex as well I think we're both very strong people in our own ways and I think we complement each other we do support each other I'm very lucky to have a pretty lenient wife and honor and she puts up with an awful lot more so than a lot of a lot of the wise would do um but I yeah my training regime I do I train maybe nine or ten times a week definitely six days sometimes seven sometimes only a day off in out of ten in the last six months um with this one I've been training from 15 hours up to 25 plus hours of exercise a week I mean I was out doing six and a half hour bike rides followed by two hour runs next day I was doing a two-hour swim and an hour and a half swim and then going for a run it was um it was it was intense six hour bike rides on a Saturday is quite an impingement on family life but you're resent it I don't resent it no don't they accepted yeah as necessary um not necessarily necessary um constructed yeah how much do you think Harrison knows about the challenge um I think he just knows his day-to-day challenges which are uh playing tag in the playground and getting upstairs and day-to-day tasks I don't think he thinks much beyond that and what about the challenge itself the the Iron Man do you think he knows why dad is doing it no no no I don't think so all right let's go to the official race website my wife and I've always said to each other that we'd be honest when he asked questions um let's do two laps we try and give him information as as he developed the amount of skills to deal with it and be old enough to deal with it so what do I do first I do the swim first yeah and then what bike and then what from the run which I'm gonna which I go Finish Line two seconds before you oh yeah what does that mean if you go through it before me forget medal our biggest worry when kids want to to find things out when they're eight or nine years old they're starting to oh Google it so they'll get on a computer and they'll Google the word and say this is what he said that is the last place I wanted to find out and when you're riding it looks like that and he says in there you know my daily feeling it why does daddy do everything [Music] to you have to say it once oh do you know why don't you want to say tell me because I don't want to talk he knows he's got pulling muscles he knows he takes his medicine because his muscles aren't working as well as his friends worrying about William um at the moment all he knows is that Harrison's got pulley muscles he knows that he won't get wooly muscles because it won't affect him it's just affecting Harrison this to me it's time table sorted yet six times table fives no yeah yeah and there's always Harrison's medication to remember quickly I just dropped it in water quick quick get it in oh no I missed I missed the kit quick get it in slowly sorry yes blood pressure pills done yeah stretches remember okay now [Music] [Music] he knows that we're trying to raise money and fund research to make muscles better done definitely doesn't understand that at the moment his muscles are gonna continue to get worse and worse and worse five four three two one done hold on [Music] thank you [Music] I don't want you to do my boots [Music] the boots are to support Harrison's failing leg muscles where's my cuddle no no do not do that kissing high five [Music] what stop there I've never been able to lock out the emotional impact of the disease because patients write to you every day and I've always been one of those people that when I go home at night I'll make sure I answer those emails by return or at least within the next 48 hours and explain what the situation is so you can get some very challenging questions at midnight which is good this letter was written on March the 6th at 23 minutes past midnight just before Christmas My adorable grandson Leo age four was diagnosed with the Shen muscular dystrophy not something we knew anything about I made myself watch a timeline showing the effects of the disease and my heart broke I cannot bear thinking about the future I just wanted to say please find a cure Harrison attends the local school a lift means that he can avoid the painful Journey up the stairs use it often to keep it working properly if you sit around or a day you will become unfair when I first started I it took a long time to get my head around it it's hard seeing any child struggle but knowing that it's not actually going to get better it is very difficult everything that he's going through he just gets on with it and I think that's the way he just he just says let's just get on with it let's just do it but now we make sure he enjoys every day as it is and uh without look he looks forward to the future and that's all that we can hope he's got the love and support of his family and a lot of people and he will change a lot of people's lives without him even knowing it I think that's important he's certainly changed mine he loves life he likes doing lots of fun things he's very independent like he wants to do stuff himself but um yeah maybe it's me being more protective because I know his capabilities Harrison misses out on loads of sports team sports team games he'll miss out on that interaction with friends he may not get invited to a party or um on play date it doesn't bother him but with me more yeah in their Race Against Time scientists reported that work on laboratory mice proved that when injected the drug eutrophin was uniformly reaching the muscles of the infected animals Professor K Davis you get these little breakthroughs that you don't expect and that's what makes science so exciting we call this protein eutrophin uh nobody else really thought it would work and so we set about taking that whole sequence and putting it into a mouse that had Muscular Dystrophy and proving it and if we express lots of this other protein called utrophin in muscle cells in an adult Mouse can we prevent the muscular dystrophy in that mass and the answer was spectacularly yes we could it virtually cured the mouse we got already substantial evidence that it will work in man and now we just need to get through those human trials we're very confident that we will be able to come out with a drug that will be able to modulate the expression of the eutrophone gene to cure muscular disc or to treat muscular dystrophy you said the word cure uh yeah because I've always wanted to cure it and I don't know how close we'll get [Music] it's raining come on no um [Music] where are we going where are we going now we're going up to Norfolk Harrison is finding new friends a company making carbon fiber components in East Anglia will build a unique buggy for him and for his father to carry him in around the triathlon course I'm trying to do one good cause every year and this was something totally different we took an existing buggy we've basically removed metallic sections and replace them with composite sections carbon fiber sections which has has saved about six and a half kilograms this is the buggy as it came to us and our first task was to see what we could do to reduce the weight and originally it was designed for two children so we had to then adapt that to obviously accommodate Harrison as best as possible being a 11 hour race and Comfort was quite a um a key part of that Next Step was to create a 3D model which we could then use to redesign the buggy and hopefully shift some some real weight out of it we decided to sort of create an aluminum carbon hybrid and this is this is what we came up with all the green Parts here show what we've replaced with carbon fiber it's a simple cam fiber tube and all the blue Parts here are parts that we've had to make to fuse the carbon fiber tube to the existing aluminum structure pursuing that a buggy if you've saved six and a half kilograms that's that's huge if you think why all bikes are going carbon you know their lights are going uphill it's as simple as that [Music] I'm bored I'm bored say that all the way for two and a half hours I'm bored I'm bored you're not allowed to get bored already what about when we're when we're running for for four hours and biking for seven years you'll have your iPad and DS of course of course I'd rather not carry too much no you're not carrying it it's all in the thing I'm on it exactly well putting an iPad in DS in doesn't make it heavy really no the lights we've predicted around five or six kilograms I reckon we saved about 6.3 kilograms we were above that so that's good pretty pleased with that this is exactly the weather we don't want for our challenge isn't it Harrison might want this weather [Music] no because we won't be inside well I will in the running and the biking bit kind of kind of I don't think it's going to have a cover on the top well if it rains yes if it rains you'll probably put your waterproof stuff on it this won't be raining hours this June you like it yeah look of it yes wow where's your bit this is my bed anybody else get in there gonna wait for me you win [Music] how you doing good how do I look good yeah [Music] [Music] I'm chilling in the back so how'd it go I thought it went brilliantly thank you very much um I was expecting it to feel like I was pulling a lot and didn't at all actually yeah didn't thought it's a bit strange I know I'm not gonna be doing that the suspension in there but um generally I think amazing and Harrison are you are you comfortable are you are you properly comfortable another four ish On The Run yeah [Music] all right I feel desperately sorry for these families because they're just sitting and watching and hoping and waiting even if we can't get Harrison before he goes into a wheelchair then at least we can stop it deteriorating thereafter that has to be our goal we have to increase the quality of life and in fact give them a long life very soon as Harrison's condition deteriorated The Smiths decided to move to a new home with no stairs this house works for now because he can still walk it's an assign a struggle on the stairs you know I carry him up a lot but he was able to get up but now he's getting to the point where he almost can't I was starting to get worried about his safety going downstairs we've never lived on one level before the most important thing is that it's flat it's there are no steps inside there's very few trip hazards um it's got a lovely flow to it so we're all kind of in the same space um it just allows us to be a family together it's a happy house you know we're in a three-story townhouse and our Lounge was upstairs our kitchen downstairs and it just became a shouting house it was a house where one person shouted to another one up upstairs or downstairs Harrison very keen to understand where everything was going to go in the new house it's constantly saying I need to visit this house before we move in because if it doesn't work for me and my bedroom is not how I wanted I don't want to live there Hugh house action yes it's my room gonna put a big bed and I've got my stuff ready for Cubs go oh my toys and books in these cupboards it's my desk chair I've got a big window so I can see out there and now we're gonna have a look at my brother's room but uh ten pounds we're gonna go this is enough normally normally there's sometimes a cat here and there's the garden with a football goal is there anything you change about the hotel you're a big TV and with an Xbox on it like the only thing I would change I would make the house bigger just because you don't have your stairs without any stairs but I'll make it bigger this is my brother's room seriously this is my brother's roommates [Applause] it's my life it's not [Music] doing it because we're trying to help other people with pulling muscles like me I Just Wanna Live when I died [Music] what do you think we're gonna raise some money doing this how much would you like to raise [Music] one million pounds yes please now that would be good [Music] [Music] [Music] [Music] it's my life is [Music] do you think we can do some damage very good who would we give it to the scientist scientists I used to say actually that I needed to cure this disease by the time I retired but I'm not going to retire so I have to I said in the next five years I think we'll have made a significant advance in the clinic Alex has an important medical hurdle to cross he owes it to his family to find out if he's physically capable of completing this Triathlon event nice and low 54. say you haven't seen pain you get to say you see what the financial excellent [Music] [Music] last night [Music] foreign [Music] [Music] jump again [Music] that's it [Music] so suck it up spin the legs I know I'm physically able to do the Iron Man because the Medics have looked at me they've checked everything my heart's all right my lungs are all right my blood pressure's all right so I'm in good shape Darkness I've seen the numbers if I had to put a description to it I'm a fat bloke with a good engine [Music] that's a quote [Music] so on June 10 2015 Alex Smith and his family left England to compete in challenge Denmark an international iron distance triathlon we arrived yesterday close to biland at Legoland and um we've been getting everything ready for the triathlon which is tomorrow morning starts at 6 55 um I'm trying to remember everything that I can eat for the day so I've got a not nipple blasters not the sexiest thing but nipple glasses to um stop them chafing I've got freedom bags we've got a swim bag a bike bag and a run bag and and I always miss something I'm gonna try actually not to miss something today some of the best track leads in the world living or staying in houses around us and it feels very bizarre to have a film crew with the average bloke hahaha so a piece of Rex my father-in-law Nick how are you hi I'm Rex Peter Williams thank you um the whole family get together to cheer on Alex and Harrison brothers sisters cousins grandparents no no no I'm happy to do some oh that's great so I mean the breakfast I have in the morning of an eye man is a mama breakfast it's made of Oats yogurt and fruit oats give you lots of energy and it's slow release over the course of the morning you need a couple of hours for that to digest you don't want to be getting into the into the water with a belly full of food I think those things is a little bit different you never know what the day is gonna gonna bring it's a long day um it never goes exactly to plan there's always a hiccup somewhere um and then I have my breakfast and I just try and relax and try and chill uh it's an early start and I know that I'm going to be out exercising hard from sunrise to sunset welcome back to breakfast with Bob we are at challenge Denmark at beautiful Legoland our next guest Mr Alex Smith from Harrison's fun great to see you bud thanks so much for taking time thanks for having me on duchenne musk in the district League talk a little bit about the prognosis and it's uh over the next couple years it's not a pretty sight no so duchenne is it's a fatal muscle wasting condition um I think it's 99 boys one percent girls it's genetics passed down generally from Mother's Son reality is you're getting to spend 13 14 hours with your son yeah on an interrupted time yeah and that's that's a special thing I mean that's that's always the best part of the day to be honest you know that's that's the bit that's going to get me through I met the full-time world champion of Iron Man world champion yesterday and uh he goes yeah you're that guy yeah yeah I'm that guy it's like you are mental so when I when a full-time Iron Man champion tells you your mental a few doubts in my head after that and it's like no but at the end he said hey good on you son that's uh that's awesome and I'll see you out on the course Alex Smith is not a professional athlete he has taken on an enormous challenge the pressure is intense it's nearly 12 now okay so half an hour race briefing yeah and then we'll we'll take well we'll load the bikes then and then we're gonna we'll later on go on down to the lake so we can yeah try and cut them around out and also you've got rack all the bikes to this afternoon yes three friends will accompany Alex and Harrison during the race they're all experience triathletes they can support and encourage Alex but during the race they can't physically help him they joined team Harrison because they believe in what Alex is trying to do one of them Gary has a son with duchenne just like Harrison I'm nervous now I'm more so now that we're we're here and we're putting bikes are in and so like next time I come back here we're going to be racing um and it's weird I'm looking at the boat today and it suddenly seems an awful lot bigger than it did yesterday how's this program for the day before is to uh relax and enjoy himself and to go to Legoland and hit the water park and have a nice feed and do all that sort of stuff um we haven't practiced with with him while we're here I want him to enjoy his time but we will uh he will be ready tomorrow for a long day a bit of endurance day for him but still an amazing time we've spent the whole time getting ready um getting the bike sorted uh getting any last minute technicalities that uh sometimes go technicals that go wrong with the bike so mine lost a piece that makes the seats stay up which is a moment of panic I Disappeared to my bedroom and let everybody else sort it out there's uh inside there's a wedge since there's like a quill cool stem so you screw and but the problem is it's not fixed so if you take the saddle out it drops into the frame so we've had that twice with this particular bite so there's lots of uh stuff you just have to get done you have to go to race briefings you have to go and meet people he's driven he is very driven he's very passionate he's if you look at Harrison now you see Alex 30 odd years ago it's very similar very stubborn very I want to get this done now not to not tomorrow not the day after now he had to rise to a challenge he wants to make it right so for him at the moment it's finding that cure he I I think he'll feel he's failed if he hasn't I don't want to let Harrison down he's been really looking forward to this and I want him to get around and I want to have a really great day with him but it's it's a really long way to beat deck hoyt's record Alex will have to complete the 141 miles in 13 hours and 46 minutes this matters to Alex Smith uh so I've seen the course and it's thankfully as flat as I thought it was swim here is it's weird looking out there now that looks quite big and we're going round it twice do you think about the record I think it will be will be we might be close uh my confident I am confident that I'm going to have a good day with Harrison that's I'm confident about that um one of the things I will be sharing in tomorrow is is as well as how much how much a dad can love his love his son that's right he might teach me a little bit about being a cool kid the race day weather is good Alex Smith has spent the past two years building the profile of this Mammoth challenge now he knows he has to deliver so I woke up at four o'clock this morning suddenly the day has arrived that was it I'm actually gonna go out and do this thing that we've trained so hard for for so long um I'm actually just really looking forward to starting getting it then all you have to remember to do is starter it's been two years in the making this one's excited I'm kind of excited the team are ready taking the piss out of me which is very nice it's been a long haul it has it's going to be another long haul for the next 40 hours as well the team remind Harrison what to do as things go wrong yeah just hold up super great pleasure Alex privately had set himself what he called an optimistic Target for the swim which was one hour and 35 minutes the apprehension the start is everything going to go right there was so many things it could go wrong that hadn't been tried the team hadn't worked together before when tried the swim exit we the bikes were an unknown we'd never used those before how we would get through the run the emotional ups and downs how Harrison would cope as well and I think that was the biggest concern for Alex really completely I just think it's the um like the motivation he receives from Harrison um to to push himself to limits that he does I don't think without that kind of motivation I don't think that um I don't think it's possible [Music] Harrison pulls in for the Long Haul he just seemed very calm which was quite nice um dumped fists on the start line [Applause] I'm trying to raise as much money as I can to help save the lives of people like myself people like Harrison who who without us finding a really great treatment or potential cure in the next three or four years he'll lose the ability to walk in the next 10. he might not be here um so it's a really simple thing for me it's like if I can get around this and raise lots of money and bring lots of awareness to both to Sham and to the work that we do with our charity then Happy Days it was a very personal thing between himself and Harrison and it was you know nice to be there and be part of it and and see that special bond you know when I got involved I said the one thing you don't need to do is thank me I need to thank you for letting me get involved when I look at it I would deal with my own situation and deal with it as best as I could I'd like to think you know maybe I'd make a decent fist of it but would I be anywhere near what Alex is doing and have that Spirit to say you know I'm going to beat this probably not in time for Harrison but I'm gonna you know stop future Generations having to deal with this no but yeah yeah incredible [Applause] [Music] [Applause] we knew that we could control 17 hours or however long it took of emotion and pain but Harrison's an eight-year-old boy and you've got to deal with the mentality of an eight-year-old boy for that amount of time [Music] didn't seem nervous a big smile on his face avoid about the time with him um they're like having being out there for that long in the water [Applause] [Music] Harrison I really had my doubts about whether he could do it I really did it only needed him to stand his ground say no I'm not doing this no I want to get out I've had enough and that would have been the end of it amazing guy and it's great to have a son-in-law I get quite emotional about it myself personally um so uh but I think they're doing a superb job and I just hope we do find a cure in time because um you know he deserves it they all deserve it [Applause] together [Music] the first leg of the triathlon is over Alex has met his Target time he has swam two circuits of the lake in well under one hour and 40 minutes [Music] thank you the swim went better than planned oh I'm still shocked by the swim I'm really trafficking to swim I wasn't expecting certainly wasn't expecting to drop people in this way [Applause] post swim the fueling stage is basically the bike you've got seven hours or six hours for five and a half hours to fuel yourself to get through the bike and get ready for the Run I have a little picture of of Harrison on my top tube on the bike so I can I can look down I can see him and know that he's with me he wouldn't let me give up cycling is the longest leg of the triathlon 180 kilometers but Alex it's also the most severe test the first half of the bike went brilliantly um it was tough and it's really windy um but I looked and watched then I thought oh we're coming on target here there weren't that many Hills it's just the effects of having tow the weight behind it it just it takes everything really tough on the legs it's constantly saying come on Daddy come on I'm really trying here let me start talking a lot when we're going up hills not on the Hills don't try and talk to me when I want the help do you know I I have an inkling that he will go at some point he will he will pass out on the bike and he'll be fast asleep um the motion and it bounces as well suspension on it so if he doesn't fall asleep I'll be amazed Alex's Target for the cycling leg is seven and a half hours about 65 70 miles into the bike um I think he found that quite tough with the wind and there's a few undulating areas he was in a pretty dark place and he stayed in that pretty dark place for the remainder of the race but he just he didn't stop he just kept going um so it's you know the the doggy determination and the um and the stubbornness so you know he's not going to give up the last 30 40K of the the bike was really hard um and then it all went a bit to its time then a crisis it's obviously have been a bit delayed yeah well it's now now over seven and a half hours which was they was would have they were on target for nearer to 715 they've lost some time just speaking to one of the motorcycle uh referees going around he said that four kilometers away they've had some kind of technical problem with the bike so obviously Alex wouldn't be allowed to get any assistance from from the others I don't believe we don't know where he is really yeah we've done 106 miles they're like a film when I was pedaling I could feel this one just kind of rolling I was uh de-threading my the inside of the crankshaft which is the bit your pedal goes up um to a point where it actually came off on the bottom of my shoe in that moment I've had a little bit of panic actually um that my day was going to be done it was going to be all finished and it would be a mechanical problem as opposed to me not being able to do it [Music] [Applause] [Music] so he's had to swap take my bike and attach The Chariot to the uh to my bike so I've had to Pedal back last five miles how many minutes yeah second half of the race was so the bike was so hard and I knew I'd taken a lot out of myself doing it but um I didn't know at that point whether I'd have a four and a half hour marathon with me when the demons in your head start to say don't worry you can stop you can give up everyone will forgive you it tells me I've had enough but the rest of me says no you haven't there was just no way he was going to stop at all [Applause] oh losing a pedal costs Alex around 45 minutes but now take a miracle to break dick hoyt's world record [Applause] s on the inside of the crank have just strepto so the pedals the pedals just come off I suspect he's probably in uh quite a lot of pain as 112 miles is a long way to cycle especially after a two just over a two mile swim and then obviously he's got a marathon to look at as well but he was looking in good spirits [Music] he's trying to create awareness he's trying to because it's not always just about the money seeing it for himself he's doing with Harrison he's doing it for all you know every not even just a Shams like every child that has a disability because the charity is his work that's that's fine you know that gives him the freedom to have the time to do probably a bit more than say if he had a nine-to-five job for you the day-to-day strain must be very difficult a lot of people have said recently I don't know how you do it but it's not about there's no one else like No One's Gonna do it for you so um yeah just do it you just got to get on with it 700 miles away in Brighton England a group of scientists report progress in their pursuit of a cure they discover through human trials that the fat in a normal diet will carry the drug eutrophin to a patient's affected muscles it's a real step forward it means that we started on the next phase of the journey towards a clinical treatment our team are just thrilled I mean we never thought we'd get this far and now there'll be no stopping us it's a normal balanced diet that allows the drug to be absorbed properly I think you know in five years we'll see a real difference and hopefully we'll be just in time to keep Harrison going on his feet so this is a good day this is a good day support that I had on the day from the guys who who ran with me was astounding really it would have been a very lonely place out there without them [Applause] and then it began to rain hard I thought we're going to walk most of this run but behind the buggy one two one two man on a mission [Music] foreign [Music] [Music] Alex Smith's hopes of breaking the Hoyts world record disappear the weather was was awful the rain is the hardest but one of the facts is that if it rained hard we knew that Harrison is going to get wet and cold the second lap of the grand Harrison was you know get a little bit upset because you know getting a little bit cold and wet got change of clothes and then Harrison picks up Harrison was the one that was sort of saying come on guys we're all going to finish together that last lap was very very hard um because I had nothing left my uh my stomach was turning on me legs hurt like hell my feet hurt [Music] um I could see William running along the top it's an amazing thing when you get support the run is not it's not about how fit you are and how strong you are the runners the runners in your head and the only time you're going to fail it is if your head tells you you've had enough I swear at myself um I tell myself no you haven't had enough you can take more you can run you can keep going I think about Harrison [Music] thank you I just wanted to get it done really wants to get it finished and uh took it was sheer bloody mindedness that last that last 10K head down and will yourself to the end three incredible very special people to me that um it would have been much harder without them I learned a lot going with them and when you're going into a horrible dark place having someone to cheer you out of his is amazing I could see the Finish Line I don't remember too much about the mouth but I knew that Don and William were going to try to run in with us running in was fine William wants to hurt so I'll do it with him but coming in with all that um crowd was a bit crazy it's a real bitmap Don was running with me William was running because we went too fast at the beginning it was going way too fast I couldn't keep up with him I was shouting him slow down to come with me we're coming around this corner and I was leaning over to Harrison saying we did it mate having uh we were going to be an Iron Man today [Applause] [Music] [Applause] it is 15 hours and 36 minutes since in bright morning sunshine Alex Smith and Harrison set out on their epic Journal [Music] but of course the race for Alex David Jackson Smith is not yet over The Race Against Time to save the life of his son Harrison will go on tomorrow and tomorrow there's more hope now about an alleviation of the symptoms and a treatment and a potential cure that has ever been in the history of the show I am pretty confident that this generation of boys will be the last generation to die there's lots of stuff out there there's lots happening it's just slow because time just goes like you know we found out when he was four and a half and he's now eight so wait I don't know the cards you are dealt are dealt because you're strong enough to deal with we get one shot at this life right and if your cards are dealt then you you need to play with them right so I play with these cards [Music] foreign [Music] [Applause] [Music] foreign [Music] foreign [Music] foreign [Music] foreign

Channel: HarrisonsFund

Views: 85,093

Keywords: The Challenge, Salon Pictures, Peter Williams, Alex Smith, Duchenne, Duchenne Muscular Dystrophy, DMD, Ironman, Ironman Dad, Greatest Ironman, huub, Catamaran, 140.2, Ironman Triathlon, Challenge Denmark, Challenge Ironman, Legoland, Oxford, Dame Kay Davies

Id: RcSzCF_kRDY

Length: 82min 53sec (4973 seconds)

Published: Tue May 22 2018