Christmas miracle for young brothers
Smiling with joy, these two young brothers have been given the best Christmas present they could ever ask for – a wonder drug that will change their lives.
Jamie Dundas, 12, and sibling Sammy, six, from Hipsburn, suffer from a rare form of cystic fibrosis (CF).
The pair have the disease’s G551D mutation – which affects only about 300 patients in England.
Over the years, they have had to endure frequent nebuliser and physiotherapy sessions, as well as having to take up to 50 tablets a day.
But now, this gruelling routine will become a thing of the past, thanks to a landmark decision by the NHS.
Less than a week before Christmas, it was announced that the organisation would fund ground-breaking drug Kalydeco, from January, for those in England who are over six years old and suffer from the G551D mutation.
For Jamie and Sammy, the breakthrough is huge.
Kalydeco is the first licensed drug that treats the fundamental defect in people with CF and is effective for the four per cent of patients in the UK with the disease’s G551D mutation.
It has a significant clinical benefit and will improve and lengthen the brothers’ lives.
Their delighted mother, Sarah Dundas, 33, who is married to Norman, 45, said: “It is the best Christmas present ever.
“We still can’t believe it, we’re in shock. But we are so happy, elated and over the moon.
“It is such a revolutionary drug. After all these years of worry, we can now look forward to the future. We have got hope.
“Once they take Kalydeco, they should hopefully get weaned off all the other medication. Once this happens, they will only need to take two lots of Kalydeco a day.
“Hopefully they will lead a pretty normal life, and it should also increase their life expectancy.”
The decision, announced by the North of England Specialist Commissioning Group on behalf of the four SCGs in England, comes after a campaign by families and the CF Trust to ensure this transformational drug was made available to patients as soon as possible.
In November, we flagged up Jamie and Sammy’s fight and encouraged as many readers as possible to sign the CF Trust’s petition for the cause.
On the back of our story, we were contacted by Teesside-based Clare Caunce, whose child is also a G551D sufferer. She offered to give Sarah and the family support and information and wanted the Dundases to join the group she is involved in which was trying to push the Kalydeco decision.
Sarah said: “We would like to thank the Gazette so much for doing the article on our sons. Through friends, family, Facebook and the Gazette, we managed to gather even more support for this cause which will benefit so many lives. Thank you to everyone who took the time to sign the petition.”
The Kalydeco decision is only applicable to patients living in England.
The CF Trust is continuing to press for this to be made available in each of the devolved nations. Scotland is due to make its decision on January 14. Decisions are yet to be made in Wales and Northern Ireland.
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Wednesday 19 June 2013
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