A mother and father have spoken of their heartache after three of their five children were diagnosed with the life-threatening condition cystic fibrosis.
Dawn and David Robinson’s daughters Sophie, 15, Scarlett, four, and Spring, two, all suffer from the deadly condition cystic fibrosis.
Their lives are dominated by gruelling bouts of physiotherapy, regular cocktails of drugs and frequent hospital admissions - and all three may eventually need lung transplants.
Diagnosis: Sophie, Scarlett and Summer Robinson (pictured wearing the same outfits) all suffer from the life-threatening condition cystic fibrosis. Pictured with parents Dawn and David and siblings Declan and Spring
‘Scarlett was diagnosed at just four weeks and spent the first few weeks fighting for her life in intensive care in hospital while Spring was one-and-a-half when she was diagnosed.’
The mother-of-five added: ‘It is normally detected with heel prick tests and although Scarlett’s came back negative, we knew as parents that she had all the signs of cystic fibrosis.’
The couple have two other children unaffected by the condition - Summer, nine, and Declan, eight.
Last Christmas they bought a nebuliser - a device which turns liquid medication into droplets so that it can be inhaled - which the girls use twice daily.
Hope: The girls' parents are now trying to raise £10,000 to buy a physiotherapy vest to help their daughters breathe more easily
Mr Robinson, a long distance lorry driver, said: ‘We want to get a physiotherapy vest. It vibrates the lungs to move the secretions around and help improve their breathing.’
The girls have regular clinic appointments, check-ups and courses of antibiotics given intravenously in hospital but may eventually need lung transplants.
Spring and Sophie Robinson who, along with sister Scarlett, suffer from cystic fibrosis
‘It’s when your lung function gets below a certain threshold.
WHAT IS CYSTIC FIBROSIS?
CF is one of the UK's most common life-threatening inherited diseases and affects over 9,000 people in the UK.
It's caused by a faulty gene carried by around one in 25 of the population.
If two carriers have a child, the baby has a one in four chance of having cystic fibrosis.
It affects the internal organs, especially the lungs and digestive system, by clogging them with thick sticky mucus. This makes it hard to breathe and digest food.
Each week, five babies are born with CF and two young lives are lost to the disease.
However, improvements in treatments mean half of people with CF will live past 41-years-old.
It's caused by a faulty gene carried by around one in 25 of the population.
If two carriers have a child, the baby has a one in four chance of having cystic fibrosis.
It affects the internal organs, especially the lungs and digestive system, by clogging them with thick sticky mucus. This makes it hard to breathe and digest food.
Each week, five babies are born with CF and two young lives are lost to the disease.
However, improvements in treatments mean half of people with CF will live past 41-years-old.
‘We try not to think about it and take every day as it comes and whatever is thrown at us.’
She said that each of her children deals with their condition differently.
Sophie, a pupil at Suffolk New Academy, has started talking to other CF sufferers online as she carries out more research into her illness.
‘Spring just takes it in her stride and gets on with it.
‘Scarlett finds it more difficult because she has been through so much with so many hospital stays already,’ she said.
The Robinsons are also keen to help other families facing a similar situation.
‘We would like any extra money we collect to go to another family that’s waiting for a nebuliser or other medical equipment,’ said Mr Robinson.
The father’s friend, Chris Catling is to have his hair cut off on Saturday in a bid to raise money for the Robinsons’ fund and has already raised more than £500.
The hair will be donated to The Little Princess Trust to provide wigs for children suffering from hair loss.
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