However, hope was afforded when the family heard of a drug called kalydeco which, although not a cure, could improve Maisie’s life significantly.
Kalydeco, which is also known as ivacaftor, helps sufferers who have the G551D gene mutation. Around four per cent of CF patients worldwide have the gene but in Scotland that figure rockets to a 11 per cent, hence it is also known as the “Celtic mutation”.
And although the drug is not available in Scotland, it is available in England and will soon be available in Northern Ireland.
Now mum Tilda, who worked at the West of Scotland Genetics Centre, at Glasgow’s Sick Kids Hospital at Yorkhill, but quit to look after Maisie, is pleading with the Scottish Government, who will announce their decision over the drug soon, to help their daughter lead a better life.
The 36-year-old said: “Three months ago we weren’t aware this drug existed, and we didn’t think it would exist in her lifetime. It would completely change her life.
“She is very severely affected by the CF and misses an awful lot of school.
“She has a gruelling daily regime which includes up to two hours of physiotherapy and she takes so much medication it’s a constant battle to keep on top of it.
“All the drugs she takes just now treat the symptoms of CF - kalydeco would actually treat the cause. For instance she would be able to join after school clubs because she would not have to do as much physiotherapy.
“ It’s so time consuming what she has to do in a day - with kalydeco she would essentially be able to lead a normal life. You can’t see cystic fibrosis.
“From the outside Maisie appears to be just like any other happy and healthy seven-year-old girl. However, what is going on inside is a different story.”
However Tilda believes that the Scottish Government could refuse to roll out kalydeco due to the cost involved - which is around £1500 a month.
Tilda has said the family would take out a second mortgage on their house to pay for the drug for Maisie. She added: “When you see the cost of what she’s currently on and the cost of hospitalisation then it makes more sense to have kalydeco.
“In the weeks leading up to Christmas, Maisie was in Yorkhill with pneumonia, from which she is still suffering the after effects.
“This time of year is always a worry as she is so susceptible to all the respiratory bugs that are circulating.”
A spokesperson for the Scottish Government confirmed that the Scottish Medicines Consortium will publish advice on ivacaftor (Kalydeco) for the treatment of cystic fibrosis on January 14.