Accrington girl with rare heart and lung defect is Christmas Child contest winner (From Lancashire Telegraph)
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Accrington girl with rare heart and lung defect is Christmas Child contest winner
AN angel-faced little girl who was born with a life-limiting heart and lung defect is set to celebrate a 'perfect Christmas'.
Five-year-old Madison Kennedy-Finglas, from Accrington, suffers from a rare heart defect called Scimitar Syndrome which means she needs a mobile ventilator to help her breathe. She also has bronchomalacia - weak breathing tubes - is profoundly deaf and has muscular problems.
But despite all her adversities, she 'takes it all in her stride', said her mum Danielle after she won the Lancashire Telegraph Christmas Child contest in association with Blackburn's Mall shopping centre and Blackburn Market.
She said: "When she was a baby she was in and out of intensive care. She was on full life support countless times, but she survived.
“She had her last rights read her at three months and was christened in hospital. Doctors didn’t think she was going to come home and there is no surgical way they can help her.
“They tried to prepare us for the worst, but she proved everyone wrong. She’s a little fighter, but she will always need the ventilator.”
Madison was chosen as the winner of the Lancashire Telegraph's ‘Christmas Child’ competition after judges were touched by her overwhelming courage and determination.
She received a Mall gift card for £100, Debenhams voucher for £100, Thorntons chocolates, a prize from Primark, a complete Christmas dinner courtesy of Blackburn Market, Santa’s Grotto toys from the market, Christmas wreath and giant Millie’s cookie.
Danielle said: “She love shopping. She really deserves a treat for everything she has been through.
“She has been very excited and will love showing everyone all her presents. It has really made her feel special.
“We would like to say a big thank you. I know there are a lot of children that are very deserving.
“This Christmas is going to be even more special now.
“Both my family and her dad’s family will come to my house this year for Christmas, because it’s easier for all the equipment."
When she was born doctors discovered Madison’s heart was in the wrong position.
She spent the first two and a half years of her life on life support at Alder Hey Children's Hospital. She came home from hospital aged two and a half and her family were told to make the most of her time.
The family now have to take an oxygen tank, mobile ventilator, airways suction machine, tracheostomy equipment, and other life saving equipment on every trip they make.
Danielle said: “Madison was intubated at about three months old when she became critical and we have never been able to get her off the ventilator.
“We have to take all this with us, everywhere we go. Even if it’s just across the road to the shop."
Unlike other school girls, Madison will never be able to go swimming or play out as she needs constant around the clock care.
Danielle said: "For the same reason, she can’t stay over at a friends, and she can’t really have friends over because she has carers in her room throughout the night to monitor her breathing, heart rate and oxygen levels.”
But the family, including sister Macey, four, and brother Dylan, 11, have seen her go from 'strength to strength' over the years.
Danielle said: “We certainly never thought we would see the day she went to nursery, or school.
“She still needs the highest level of support, but we have a stable care plan.
“If you could hide the tubes, she would look like any other happy little girl. She is always smiling and has such a spirit about her.
“Doctors are not hopeful that she will ever come off the ventilator, but even if we could build up to half an hour a day that would be a massive achievement.
“I would like her to have the freedom to run around. She can only go as far as the tubes can reach so I have to follow her all the time.
“She is such a determined little girl. She takes it all in her stride.”
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