A mother whose two children suffer from a rare form of cystic fibrosis (CF) has made a plea for people to sign a petition calling for a breakthrough drug to be made available on the NHS.
Youngsters Jamie Dundas, 12, and his brother Sammy, six, from Hipsburn, have CF’s G551D mutation – which affects about 300 patients in England.
In July, regulators approved the treatment of Kalydeco – a new drug manufactured by Vertex Pharmaceuticals for those over six years old who have this form of the disease.
The treatment corrects the basic genetic defect and has a significant clinical benefit.
However, because of Kalydeco’s potentially high cost, no decision has yet been made on funding it in the NHS.
Due to the delay in making the drug available, the Cystic Fibrosis Trust has launched Campaign for Kalydeco – urging NHS commissioners and Vertex to agree a cost for the treatment.
A petition has been created to put pressure on.
And Sarah Dundas, who is mother to Jamie and Sammy, has called on people to back the fight by registering their support to the campaign.
The devoted mum, who turns 33 today, said Kalydeco would transform the lives of her little ones.
“If Kalydeco was to become available, it would give so much hope. It would change the lives of Jamie and Sammy,” she said.
Currently, Jamie has to take around 50 tablets a day, while his younger brother has to take around 30. They both have to endure nebuliser and physiotherapy sessions.
But Sarah, who is married to Norman, 45, said: “Kalydeco would mean that they wouldn’t have to have the gruelling treatments they do currently and would mean they would have to take significantly less tablets on a daily basis.”
A final decision on funding Kalydeco is expected in December.
In the meantime, the CF Trust is calling on people to continue to sign the petition.
And Sarah added: “The more signatures we can get, then the more support we can get and the more we can show the strength of feeling about this.”