Extraordinary People: The Tiniest Boy in Britain - Monday, 21.00-22.00

extraordinary people: the tiniest boy in britain
monday, 21.00–22.00

Five’s acclaimed documentary strand continues with the story of two-year-old Alex Connerty, Britain’s only primordial dwarf. Alex was born with an extremely rare condition that has stunted his development and means that he will grow to be no taller than three feet. This film follows Alex and his family as they travel to the US to meet the world’s only expert in primordial dwarves, in the hope that he can tell them what their son’s future holds.

Alex Connerty from Liverpool suffers from a remarkable genetic disorder called primordial dwarfism, which results in smaller physical development from the womb onwards. This condition, barely understood by doctors, affects an estimated 100 people in the world, and is so rare that it can be difficult to diagnose. So little is known about the disorder that doctors cannot even predict how long Alex will live – whether it be two, five or ten years. It is known, however, that primordial dwarves almost never live beyond 30 years, and that they are at greater risk of internal organ problems.

This film meets Alex’s parents, Sue and John, as they talk frankly about living with a condition that has baffled medical experts. Sue explains that she knew something was wrong with Alex even during pregnancy. She had three miscarriages before conceiving him, so was especially alarmed when Alex did not move in the womb. “I bought a listening device so I could hear his heartbeat just to put my mind at rest,” she says.

Doctors assured Sue and John that Alex was simply a small baby; however, at 30 weeks, a scan revealed that Alex had stopped growing. Sue was rushed into hospital for an emergency Caesarean. “I was devastated – I thought I had lost another baby,” she says. Almost one third of primordial dwarves die at birth or soon after – but, against the odds, Alex survived. For the first three months of his life, he was kept in intensive care as he battled stomach and lung problems. Then a visiting geneticist examined Alex and came to a conclusion that his parents had never expected to hear. “She said, ‘your son is a primordial dwarf’,” John recalls. “I didn’t understand what she was on about. She tried to explain. [When] she told me he would never be bigger than three foot, I laughed in her face.”

After the news sank in, John and Sue had to come to terms with the terrible consequences of Alex’s condition. Aside from his curtailed life span, he would never be able to have children, and was at risk of slow development, spinal curvature and breathing problems. The couple were further staggered to learn that there was little information their doctor could give them. “He literally said, ‘I don’t know the answer’ to most of our questions,” Sue says. “We were flabbergasted.”

What is known is that Alex is in severe danger of suffering a ruptured blood vessel in his head – a common occurrence in primordial dwarves, whose brains often develop faster than their skulls can accommodate. This is why the Connerty family have decided to travel to Seattle to meet the only world expert in primordial dwarfism: Dr Charles Scott. In Seattle, Alex has access to a type of MRA scanner unavailable in the UK, which may help give John and Sue the answers they need about their son’s future development.

While in the US, the Connertys also find time to visit the ‘Little People of America’ convention, where they meet the parents of other primordial dwarves, and discover that they are not alone in coping with this incredible and disturbing condition. “Our son will walk with giants for the rest of his life,” Sue says. “But to us he is a titan, and already people stand in his shadow – his family among them.”

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  • elle jackson

    hi i love watchin extrodenary people, i find it really interesting but i was wondering if any of these programmes are repeated again because sometimes i miss them but really wanted to know what happens like the tiniest boy in britain as i can on get channel 5 on 1 tv.

    i would very much appreachate if you email me bk with some information about what i have asked you.

    from elle jackson

    would be nice to hear from you

  • sharon

    Regarding Alex, The Tiniest Boy In Britain.

    If you are able to……
    Please pass on this message to all involved.

    What a remarkable strong family you are, especially your marriage. I wish you all the good and love in the world.

    I was in tears with you last night, I have one son who is 9 years old and fortunately very healthy. I am a lone parent and do not know how I would cope if I was in your situation.

    You are a credit.

    I live in Chester and please forgive me for saying this, but Liverpool can sometimes be described as, well you know what I mean, but living so near,I know different.

    xxxx

    Love to you all

    Sharon

  • Fred

    Hello

    I watched the programme on Mon. What a wonderful little boy and what a remarkable family. You deserve all the luck you get. Alex is a credit to you both and I am sure you will have many happy years together. Did I notice Alex wearing an Everton shirt? (I am a fellow Evertonian) it would be lovely to see him at Goodison Park. Keep the faith.

    Best Wishes

    Fred

  • Annette

    I watched the programme last night on channel 5.

    What a wonderful family the Connertys are, all of their children are a real credit to them.

    Alex is such a wonderful little boy and whilst I was in tears watching the programme, it was mostly because they were all so positive and a lot of us could learn from their example.

    It was so heartwarming to see that the family absolutely dotes on Alex, and how obvious it is that his siblings adore him.

    I’m sure that by now Alex will be hard to keep up with now he has his new shoes.

    I wish you all the joy and happiness in the world.

    Annette

  • Anonymous

    Watching Alex last nite was very moving and inspiring!! I wish you all the bes in the future!! x

  • Anonymous

    What an inspiration the Connerty family are. It was a heart rendering programme was reduced to tears for the whole of the documentary but again it was tears of joy at the progress Alex made in America. I wish all the family further success and happiness in the future.

    Please can we see Alex’s progress in the future.

    xx

  • sara

    being a normal 20 year old girl who doesnt watch much tv because im normally out with friends or busy at the gym or doing something to ocupy myself but last night i switched the tv on I watched this and couldnt help but cry, the whole family go through so much as does little alex, you cant help but be drawn to him and i found myself wanting to help him and hoping that everything would be ok. i really shocked myself, it made me think about others for a change and not everything is so simple,i dont normally watch things like that but it really made me think. i hope everything goes well in the future and im sure i will always remember alex. please try and keep us updated.

  • karen

    I have just watched the tiniest boy in Britain and would just like to add my best wishes to the family. Seeing Alex walking with his new shoes was a fanastic inspiring sight. I was watching constantly with tears rolling at how wonderful Alex’s parent were coping with such strength & love. Their other two children are a credit to them and showed how a famliy can provide so much love and help for each other.

    Please continue to show us the progress Alex is making & good luck & best wishes to the family for the future.

    Love Karen xxx

  • paul (the cobbler)

    To sue, John, Alex, and family
    Good luck for the future with baby alex,
    from Paul Gill & family

  • Shelley

    Alex, the tiniest boy in Britain.
    I watched this programme last night and was moved to tears throughout. What a lovely little boy Alex is, and indeed the whole family who obviously dote on him.

    They are an inspiration to us all and I wish them all the luck in the world for the future.

    Please keep us updated on Alex’s progress.

    Best wishes
    Shelley

  • Angela

    I cried all the way through the programme. What a beautiful family. A credit to Liverpool and the rest of the country! Please keep us informed of Alex’s progress. You must be so proud of your children. As they say at Everton FC – nil satis nisi optimum (nothing but the best is good enough)!
    Best wishes from a fellow scouser!

  • Anonymous

    What a beautiful child Alex is. He is a real treasure and his family are very lucky. The programme was really interesting and inspiring.
    A great family and fantastic parents for a fantastic boy – and what a great brother and sister. I’m sure Alex will have even more fans after last night – he’s a star. Best wishes to all the family.

  • Karlee Dixon

    i was in this documentry show.

  • Alexander

    I can only echoe the comments already made here about the programme of my fellow namesake.Despite such an extreme medical condition that i could never imagine existed let alone have ever heard of previous to the show i’m glad and certain that being part of such an extremely special familly he will still have a great life , full of fantastic experiences.With such upbringing he clearly has the type of charisma such that there will never be a shortage of people wanting to help him.

    All the best

    Al.

  • jeyda yusuf

    hi i watched extrodenary people just to see if little alex had the same condisen as my little girl but he doesnt my little girl is 18months and still i n new born clothes docters say that she is the only one in the uk with what she has i’ve been looking for some infor but cant find any it would be nice if i found some one that had the same has my little girl and just talk about it. my daughters feet are the same has alex’s but her hips are out of place to so she needs a op on them but the docters dont know if they should do it for her.

    please e-mail me back i need help thanks
    jeyda

  • Anonymous

    I WANT PICTURES!
    next to a normal sized person!

  • Paula

    I cried all the way through the program about little Alex Connerty and I cried again reading all the messages. I’m still crying two days later! What a little star he is. And his brother and sister too. He couldn’t have better parents. With all good wishes for a bright future for you all. Paula

  • Sue Connerty

    Hello,

    I am Alexs mum. I would just like to say Thank You all so much for leaving beautiful comments. Watching Alex´s documentary like lots of othet people had me in tears i was reliving it all. The response we have had from people who watched was amazing. Our trip to the states was amazing ans as you know we got alot more out of it that what we expected(Alex walking) wow what a moment that was. The problem now is keeping him still, he just wants to walk and walk and walk. He is fantastic as our other 2 kids.

    Thanks again for leaving lovely comments. If you havent yet visited our website please take a look as we will be trying to update it very soon.
    http://www.walkingwithgiants.co.uk

    Sue xx

  • Carole Hart

    Dear Alex

    What a special little boy you are. I watched your programme and saw what a strong loving family you have. I was very moved by your story but you are a very special child surround by love and encouragement. Made up to hear you are walking on your own and I will continue to look at your web site to see how you are progressing.

    Keep smiling

    Love Carole xxx

  • Anonymous

    We have just watched this programe on Alex and enjoyed it very much
    it made you feel that we was with you all in America too we would like to wish you all the best for the future it is good to see such a supportive family please keep us posted

    Love and best wishes

    sue and steve

  • Rosie

    Hi Sue, John and family

    Tonight I watched the episode of Extraordinary people about little Alex, after it had finished I was compelled to write to you to express my joy, my excitement and also my concern about your lovely boy Alex.

    To be honest although this rare form of dwarfism was something I honestly was not aware of and I was intrigued by the (what I can only call) rigmarole of the different tests and operations your son has had to endure, my heart went out to you all when I heard that Alex had to undergo general anesthestic. I was crying with joy by the time it had finished.

    What I admired most was the way it was so obvious what a very close loving family you have and I would finally like to wish you and your loved ones all the best from me and mine!

    Rosie

  • Anonymous

    Hi,

    I watched Alex on the documentary and it had me in tears he is a wonerfull little boy with a lovely family around him no different to a million families out there and with towering strenghth.
    But felt helpless and suprised to discover little is known about his condition if only there was more research facilities available to assist others like Alex in the world.I am sure I am not the only parent who wishes this.

    All the best to the future for Alex and his family

  • Anonymous

    oh my goodness, ive just watched extrodinary people : the tinist boy in britain. i was in floods of tears (of joy!!) Alex has got to be the most wonderful little child, such a happy little thing. i was absolutely fascinated and have got so much respect for his parents and family for staying so so strong and having so much support for him. i hope he keeps on being so smiley. what sort of things are done to fundraise for people with primordial dwarfism? ive sadly never really seen anything anywhere about it and would love to find out more about the condition and how to help fundraise….a truly inspirational family. best wishes x

  • Anonymous

    could someone please let me know if there is a charity set up for Alex

  • Hi everyone, Alex’s dad here, John, just want to say thanks to all the people who have left all the beautiful messages.

    Alex is coming along a treat, he’s walking by himself now a lot but still wants the reassuring hand. He’ still does not talk and eat anything orally but he is enjoying life to the full.

    The documentary on Alex is being aired again tonight on Five Life at 8pm.

    Since the documentary was shot June/July this year things have been positively chaotic for us all and his website (www.walkingwitgiants.co.uk)has fallen by the way but by Tuesday it will be upated with som info, pics and hopefully bit of video footage of him walking.

    Best Wishes

    John, Sue, Mike,Jess and especially Alex x x

  • faye

    hi ave just watched extraordinary people, an again alexs was on it hes so brave its the second time ive watched him i hope hes doing really well thankyou faye chris josh xx

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