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Our Stories

A space to share your thoughts and  experiences of growing up with a congenital heart condition.
What story do you have to tell? Your life story, your hopes and dreams or how you have dealt with life's challenges or a particular experience. Perhaps you are a blogger? Be in touch.
  If you have a story, video, photo you would like to share contact anne@thesf.org.uk.


Rosie wrote about her experience of surgery and what helped while she was in hospital, in her article 'I'm afraid you need an operation'. 

Check out Lucy's blog: Open Heart Surgery – My Run to Recovery.


Inspiring others

 "My name is Ashley. I Love taking part in social events with the Somerville Foundation and especially enjoyed the Bloomsbury Bowling Day and the Michael Jackson thriller Day. I met lots of new people and had a great time.

I have also attended workshops that encourage people with a learning disability to vote and have their voice heard in their community. I am a Young Ambassador for the Inspire Me Project in Manchester. I love to inspire other young people and show them what they can achieve. Being a Young Ambassador has really helped me build my confidence. I have met many new people and feel I am a good role model. I do so many things independently and having a disability and a heart condition does not hold me back.

 As a Young Ambassador I have been involved in many things including supporting the delivery of workshops to young people focusing on life skills and building confidence. I have been involved in a number of fundraising events and encourage others to volunteer.

 I went on an activity weekend in Shropshire with the Down's Heart Group in August 2014 as an Acting Mentor for the members. I really enjoyed helping others and building team effort with the group.

 I am also active on social media spreading the word about what my favourite charities do and how they support young people.”


Overcoming the odds - My Olympic Dream

Kelly Staddon is a truly remarkable young lady.                                                        

Born in 1995, she was diagnosed with Transposition of the Great Arteries (TGA), a congenital heart condition which means that the pulmonary artery and the aorta are the wrong way round. This in turn takes deoxygenated blood around the body instead of to the lungs and oxygenated blood returns to the lungs instead of going around the body.

Kelly had open heart surgery at only 8 weeks old at Great Ormond Street Children’s Hospital. Doctors at the time warned Kelly’s concerned family that she would have difficulty with some aspects of her life, and that she would ‘never be a sporty child’.

Kelly and her mother, Karen, have shared their inspirational story of their journey as a family and Kelly in her own right to show how determination can overcome all.

Kelly’s heart condition was not picked up on antenatal scans so when Kelly was born there were no initial concerns. However, from Kelly coming home from the hospital she was unhappy and cried a lot. Karen, Kelly’s mum, noticed she was frequently uninterested in her milk feeds and this is found to be common in congenital cardiac babies due to their ongoing associated respiratory distress. Karen also noticed that often her finger nails were blue and this again is due to poor peripheral oxygenation. Karen took her beautiful newborn baby to the local family doctors for assessment and reassurance, however she was often turned away left feeling like a paranoid new mother having been told nothing was wrong with Kelly.

At seven weeks old, Kelly was routinely visited by the health visitor. She immediately noticed that Kelly was cyanosed and suspected that Kelly had a congenital complication that had as yet remained undiagnosed. Kelly was referred to hospital immediately for tests and it was soon after that a diagnosis of TGA was given. Within a week, Kelly had her first and luckily only episode of open heart surgery at Great Ormond Street Hospital (GOSH).

As Kelly was treated with expert care at GOSH for four weeks, her family were resident locally in a house arranged for them by the charity ‘The Sick Children’s Trust’. This accommodation enabled Kelly’s family to be close to her when she was so young, poorly and vulnerable. They were able to see her and speak to the nurses and doctors providing her care, asking for information, advice and receiving support.

Karen explains, ‘We were numb with shock; the first days were a blur of distress, worry and phone calls to relatives. It felt like forever waiting for Kelly to come out of surgery and she was kept asleep for days with her chest open.’

‘I will never forget the day she opened her eyes for the first time, it was Mother’s Day and the best present ever!’

After four weeks of intensive care and treatment in GOSH, Kelly was discharged to her family home. Although she has had years of follow ups in clinic, she has luckily never required any further surgeries or treatments.

Kelly is fortunate to have not experienced any times of feeling unwell, tiredness or displayed any further cardiac symptoms since her surgery at such a young age. Impressively, Kelly was sitting unaided from the age of six months old and proved Doctors wrong when they said she would never be sporty as by the age of only four, Kelly swam a full length at the local swimming pool.

Since the age of four Kelly has also been practising Judo; a high intensity martial art requiring strength, stamina and agility. With the sport also being high impact with lifts, challenges and falls, it wouldn’t be the first sport of choice for most children with a heart condition. However, the practice has most certainly paid off and since the age of eight she has been competing nationally, winning seven British National Championship Medals. She has been on the England Squad from the age of 10 and is now in the Senior Great Britain Team, representing England at many international events.

Kelly has committed so much of her free time to her sport that now at the age of 19 she has been given the opportunity to train five days a week, Monday to Friday, at the Judo Centre of Excellence Training Facility in Birmingham. But Kelly needs personal sponsorship or a donation in order to do this and is hoping that maybe someone reading this might help her. The training will help her improve her skills so that she can represent Great Britain in the Tokyo Olympics 2020 in addition to European and World Championships next year.

In Kelly’s Words

“From what I can remember, Judo did not affect my school work whilst I was at primary school and this was probably because I wasn’t taking the sport as seriously then. But when I reached secondary school it was more difficult because I was doing training camps and competitions at weekends instead of being at home to do revision and coursework – so I had to fit things around my judo commitments. This was stressful as I had to prepare for my fights as well as focus on my exams. But I managed it ok and went on to gain 13 A*- C GCSEs. 

At college I gained a distinction for my BTEC in Sport A level and a level 1 fitness instructor qualification. I am now also a level 1 swimming instructor.

I feel very lucky that I haven’t suffered any major health issues since my heart operation. The doctors at Great Ormond Street did an amazing job and other than my regular checkups, I had a perfectly normal and happy childhood. I have, however, suffered many injuries from doing judo which have affected my training and it has taken a lot to overcome these. Giving up would have been a much easier option but I choose to stay positive and persevere.

I think life is 10 % what happens to you and 90 % how you react to it. Therefore my advice to anyone would be that if you believe in yourself and don’t give up, you can achieve amazing things. You should look at challenges or obstacles as an opportunity to prove how strong you can be rather than see them as set-backs.”

By Victoria Cookson, Karen and Kelly Staddon


Please be in touch if you have a story to share: anne@thesf.org.uk




 

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Information on managing your heart condition, including Physical, Emotional and Mental Health.

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