Editors Note: Kristeen Lupton will be toured the USA in 2014. She attended the Association of Bladder Exstrophy Community (ABC) Great Lakes Chapter Campout July 25-26, 2014, and attended the California Bladder Exstrophy Support Team (BEST) Campout August 1 -3 2014.
By Kristeen Lupton
Hey, my name is Kirsteen Lupton, I am twenty years old and I was born with a rare medical condition called bladder exstrophy. During her pregnancy my mum had a feeling that something quite right, though this did not prepare her for what was to come, mainly because no problems appeared throughout all of her tests during the pregnancy. It may have come as more of a shock that I was born unwell as my two older brothers were, fortunately, born healthy and happy babies.
Today, thankfully, there is a lot of support for parents with new born babies with my condition and conditions similar to mine. Also, thanks to major breakthroughs in the medical world it is easier to detect exstrophy before birth. Sadly, for my parents this was not the case at the time and this resulted in them feeling very isolated, scared and confused. From the day that I was born, my mum and dad have tried their hardest to understand and learn about bladder exstrophy so that they can help me in every way that is possible.
I had my first of many operations when I was only four hours old in a hospital in Glasgow. After many attempts and years of pain, upset and false hope for my family and I, my quality of life was not getting any better in Glasgow. Quite unbelievably and extremely fortunately, on a family trip to a remote Scottish Island, we met a lovely girl and her mother, Inya and Jane Wallace. Inya was also born with bladder exstrophy and her mum was telling my parents that she had been treated at Great Ormond Street Children’s Hospital (GOSH) located in London.
Inya and Jane were a part of BEES (Bladder Exstrophy and Epispadias support group) and were kind enough to invite my family and I along to one of their meetings. This meeting actually took place in London at GOSH and it included a tour of the ward in which Exstrophy patients were treated there. My parents have since told me, that this was the first time that they felt confident about my future after seeing the wonderful work of the doctors and nurses in the hospital. Not long after this meeting, at the request of my parents I was referred, by my GP, to GOSH.
At the age of six, I was admitted to GOSH for a life changing operation, in the form of a procedure called a ‘Mitrofanoff’. This is a surgical procedure, which involved my appendix being used as a channel from my bladder to my skin surface that allows me to empty my bladder using a urinary catheter. I went into that operation, still wearing nappies with my bladder outside my body and having to catheterise every two hours. Just hours later, I came out of the operating room with my bladder inside my body, no longer needing to wear nappies and only having to catheterise every four hours. Most importantly for me, however, was that I had my very own belly button. It sounds silly, but when you’re not born with one, getting your very own aged six is really cool.
I spent five weeks and one day at GOSH and although it was one of the hardest times of my life, I wouldn’t change it for the world. Not only did they save my life, they greatly improved it, so for that, thank you! The dedication of all the staff at the hospital inspired not only me but also my eldest brother Kenneth. Last year, Kenneth graduated as a Doctor from Glasgow University, and is adamant that this is a result of seeing, first hand, how saving lives can be so rewarding and change not only a patients life, but their families life as well.
During my stay at GOSH, I met a very brave little boy named Alex, who was suffering from lung cancer. We instantly became very close, helping each other through the hard times that naturally come with being a patient in hospital, especially when you are only young. Unfortunately, after a long, hard and brave battle, Alex sadly passed away at the age of seven. I feel that this hard time and tragedy is what really pushed me to want to start fundraising.
When I was younger, I was a huge fan of a TV show called ‘Stars In Their Eyes’ which was hosted by Cat Deeley. When I found out that she was the patron of GOSH Children’s Charity, I decided that this was the opportune moment to get in touch with my idol and begin helping the incredible hospital that not only saved, but changed my life. Much to my delight, not long after emailing them, the fundraisers at the GOSH Children’s Charity got back in touch with me and asked me to make a speech on behalf of the patients at a competition called ‘WRITE4GOSH’. As I was only ten at the time, I was half excited half terrified at the prospect of making a speech about such a personal thing in front of strangers.
‘WRITE4GOSH’ involved children writing short stories, designed to cheer patients at GOSH up, in order to win various prizes. I was excited to hear that Cat Deeley would be there along with a number of other celebrities, including one of my favourite authors when I was younger, Jacqueline Wilson. This was to be the first speech that I would ever make in public, and although I was a little bit nervous, I was determined to do the Doctors and nurses that saved me proud. Luckily, the speech went well and I was asked to attend my second event, which was the Silverstone Grand Prix Formula 1 Ball.
The Grand Prix Ball saw celebrities such a Brian McFadden, a singer from Westlife, along with Formula 1 drivers and the legendary Eddie Jordan. Even though Cat Deeley wasn’t going to be there I decided to mention her in my speech thank her for all of her help. Not long after the event, I received a letter from her thanking me for my kind words, which was lovely. It still remains safely kept in my house. Part of this event involved an auction of prizes that normally money cannot buy. My dad and I were both jointly baffled by the generous amounts of money that people were donating for things like an overnight stay for 20 people at Hamleys toyshop.
Towards the end of the auction, my dad turned around and half-jokingly suggested that I should consider auctioning my autograph after my speech had been so successful, seeing my receive a standing ovation. Half-jokingly, I agreed to give it a go, and only after this happened, have my dad and I confessed to each other that we both panicked that this was perhaps a confidence shattering idea. None the less, dad suggested to one of the fundraisers that it might be an idea, and without hesitation she agreed. Within minutes I found myself back on stage and more nervous than ever watching my dad’s idea being brought to life by the auctioneer. Much to my relief and quite amazingly, the auctioneer saw the offers for my signature start at £500 ($838 USD) and reach the remarkable sum of £20,000 ($33,508 USD). I was too relieved that I hadn’t totally embarrassed myself that I didn’t have time to realise how incredibly kind the donor had been. This, I feel, set the bench mark for me being asked to go to more events.
My fundraising has put me in touch with so many amazing and brave people as well as giving me the opportunity to meet a lot of cool celebrities. I have been given the opportunity to travel not only across Britain but I even got to go on holiday to Magaluf in Spain with my dad and one of my brothers, Martin, along with four other families from GOSH. Our holiday to Magaluf was to go and see a live show called ‘Pirates Adventure’ as they donate all of their profits from their opening night to the hospital. Although this was a few years ago I still stay closely in touch with the families that joined us as well as some of the pirates from the show, who kindly showed us around Magaluf, taking us to water parks and even playing mini golf with us.
In 2006 I was awarded the Pride of Britain ‘Fundraiser of the Year’ award after helping to raise over £750,000 ($1,256,623 USD). A Pride of Britain award is an annual award ceremony that takes place in the UK every year to honour British people who have acted bravely during challenging situations. The winners are chosen by a panel of celebrities and well-known figures from a range of backgrounds. Celebrities like Simon Cowell and Sharon Osbourne have made multiple appearances on the panel. This was a wonderful occasion for me as it was the first event that my whole family could come and experience with me. I was very humbled to be considered as brave as the other winners that evening who had all done and experienced such amazing things. The highlight of the night for me however was being presented my award by the gorgeous Jude Law and being a signed guitar to auction off by the wonderful band Mcfly.
One of the nicest people I was lucky enough to meet, however, was the amazing actor Jason Isaacs, best known as Lucius Malfoy in the Harry Potter films. Unlike his character in the films, he is one of the kindest and funniest gentlemen I have ever been able to spend time with. I first met him at Kensington Palace at the Peter Pan in Scarlet book launch. After hearing my speech and hearing that my brothers and I are fans of both the Harry Potter books and movies he generously invited us to visit the Harry Potter set whilst they were filming the fifth movie. This was a great day for all of us; my favourite part was when he described a scene from the movie for us. Since our trip to the set we stayed in close contact with Jason and he even attended a Burns supper that I was speaking at, despite being unwell to support me.
Not long after I won my award, I was approached by Virgin Books who suggested that they write a book based on my life with bladder exstrophy and my families experiences as a result, to be called ‘Pride of Britain.’ It was agreed that all of the profits from the book would go to GOSH. The book was to be written by a ghost writer called Jeff Hudson. In order for him to be able to write the book, he had to interview my brothers, my parents and myself individually for a full two days. I feel that this may have been the first time that everyone in my close family truly opened up to how me having Bladder Exstrophy affecter their lives. The first time that I read the book I actually felt quite guilty because I didn’t realise how much my brothers were affected and how much they had to deal with at such a young age. Looking back, I now realise just how lucky I am to have such an amazing, loving family who are always there for me to turn to whenever I need them.
I have also been very lucky with my group of friends that I have practically grown up with. My family and I have always been very open about my condition in order to prevent rumours going around about my illness. My friends have become a second family to me and a brilliant support base. They have all always been very understanding of my condition, although they don’t see me as being any different towards them, which I really appreciate probably more than they will ever know.
I am now a second year student at the University of the West of Scotland studying Events Management. Even though my childhood was not necessarily easy, I wouldn’t change it for the world. Having bladder exstrophy has opened up a world of opportunities for me and allowed me to help other people. Bladder exstrophy is only a part of me and will never define who I am. I only hope that people reading this will understand that although it is a long road, life is whatever you want to make it. Those struggling to come to terms with having bladder exstrophy or watching someone they love have it, it gets easier and you should never want to change it, instead embrace it as who you or who your loved ones are, scars and everything! Remember, those are only reminders of how brave and incredibly strong you are.
© 2014 Kirsteen Lupton
Click here to see Kirsteen’s Video about speaking tor California Bladder Extrophy Support Team
Contact Kirsteen at Kirsteen@courage-to-shine.org
- 2006 Pride of Britain: Fundraiser of the Year – Mirror/ITV-TV – October 8 2006
- 2008 Happy List – Top 100 in UK – Independence – April 14 2008
- The Fighter: Kirsteen Lupton had her first operation the day she was born. – The Scotland – October 10 2008
- How a teenager star Kristeen Lupton raised £750k for chairty – Daily Record – October 9 2008
- Pride of Britain: A Little Girl’s Bravery. A Family’s Strength – Kirsteen Lupton – Amazon.com