September 19 2014 Latest news:
by Lauren Everitt
Tuesday, March 26, 2013
DAILY physiotherapy, a cocktail of drugs and regular hospital admissions.
That’s what siblings Sophie, 15, Scarlett, four, and two-year-old Spring Robinson endure every day in their battle against cystic fibrosis (CF).
Now parents Dawn and David Robinson, of Clump Field, Ipswich, are trying to raise £10,000 to buy a physiotherapy vest, which will help their daughters breathe more easily.
Mum-of-five Mrs Robinson, 35, said: “Unfortunately we carry a rare gene for cystic fibrosis despite no-one in our family having had the disease before so it was a shock when Sophie was diagnosed aged eight.
“Scarlett was diagnosed at 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.
“It is normally detected with heel prick tests and although Scarlett’s came back negative we knew as parents she had the signs of cystic fibrosis.”
The couple, who also have children Summer, nine, and Declan, eight, bought a nebuliser last Christmas which the girls use twice daily. Mr Robinson, 37, a HGV driver, said: “We need to get Spring another chamber for the nebuliser as well as filters to last a year.
“Ultimately we’d like to get a physio vest, which costs around £10,000, to share between Scarlett and Spring.
“It vibrates the lungs to move the secretions around and help improve their breathing.”
It is caused by a faulty gene that controls the movement of salt and water in and out of the body’s cells.
It affects the internal organs, especially the lungs and digestive system, by clogging them with thick sticky mucus making it hard to breathe and digest food.
More than 9,000 people in the UK have the condition
Currently half of the CF population will live past 41 years of age, and improvements in treatments mean a baby born today is expected to live even longer.
The girls have regular clinic appointments, check-ups and courses of antibiotics given intravenously in hospital and are on the lung transplant list.
Mrs Robinson said: “You have to get to the stage where you need new lungs before you can be put on the transplant list. It’s when your lung function gets below a certain threshold.
“We were told the other week at hospital that Sophie could live into her 30s to 40s but we are still only in our 30s and it’s absolutely awful to have to think about that possibility.
“We try not to think about it and take every day as it comes and whatever is thrown at us.”
Mrs Robinson said each of her children deal with their condition differently.
Sophie, a pupil at Suffolk New Academy, has started talking to other CF sufferers online and doing more research into her illness.
“Spring just takes it in her stride and gets on with it,” she added. “Scarlett finds it more difficult because she has been through so much with so many hospital stays already.”
The couple also want to help other families facing a similar plight to them.
“We would like any extra money to go to another family that’s waiting for a nebuliser or other medical equipment,” Mr Robinson added.
n Family friend Chris Catling will be having his hair cut off on Saturday to raise money for the Robinson’s fund and has already raised more than £500.
His hair will be donated to The Little Princess Trust to provide wigs for children suffering from hair loss.
n If you would like to help Sophie, Scarlett and Spring Robinson, cheques should be made payable to Mrs Robinson or Scarlett’s Health Fund and be sent c/o Lauren Everitt, Ipswich Star, 30 Lower Brook Street, Ipswich, IP4 1AN.