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  who suffer from cystic fibrosis
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who suffer from cystic fibrosis
FEW children relish the thought of going to school, but for teenager Joy Kennedy it is a delight compared with the prospect of weeks spent in hospital. The 12-year-old from Port Seton has suffered from a string of conditions since birth ranging from bronchiectasis – a form of obstructive lung disease – to symptoms similar to cystic fibrosis. Paralysed vocal chords down her right side have meant Joy can only consume thickened fluids and needs to use a tube at night that passes through her stomach. She also had two heart operations as a young child. The physical limitations have left the youngster needing to spend up to a fortnight at a time at the Sick Kids hospital in Sciennes, but she has not let it stop her from attending her final year of primary school at Cockenzie. Joy’s achievements, despite the setbacks, have led to her being nominated for the Sick Kids Heroes awards in the “patient that fills us with admiration” category. The awards celebrating the 20th anniversary of the Sick Kids Friends Foundation recognise exceptional contributions made by staff and supporters, and the courage of patients. Mother Angela Kennedy said of Joy: “She has lots of different things to deal with. She does things like gym, but it’s quite hard for her. She can only do so much and then she has to sit down, but she gets there and gets through it.” Joy returns to the Sick Kids every two years for a check-up following heart surgery. She also receives help from the Butterfly Trust, which supports those who suffer from cystic fibrosis and similar conditions. In an effort to repay both organisations, the teenager has combined with her mother to make agate beads and sell it for charity. Bracelets, necklaces, earrings and rings have all been made as part of the fundraising exercise. Angela said it helped keep her daughter occupied, particularly around Joy’s hospital visits. She said: “She usually gets IV antibiotics every three months in hospital and when we go in to take her mind off things we usually do her turquoise beads. “We raised £1000. Half went to the Sick Kids Friends Foundation and half went to the Butterfly Trust.” Joy is linking up with a befriender from the Butterfly Trust to take her on outings. The charity has already helped provide the her with a guest appearance on the world’s longest running children’s TV programme, Blue Peter, with Joy put forward as a good interview subject because of her “chatty nature”. Nominator and family friend Lyn Marshall said: ”Joy has a life-challenging condition that has required many lengthy periods in hospital since birth, with ongoing treatment, daily physio, constant medication and frequent operations, yet her cheery smile is such a ray of hope to all around.”
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