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Fenland toddler Walter Olney has hope of normal life thanks to new cystic fibrosis 'wonder drug'




A Manea family is among thousands across the UK celebrating this week after the Government announced it had struck a deal for a 'wonder drug' to be made freely available to cystic fibrosis sufferers.

Leanne and Charles Olney, whose two-year-old son Walter, has the disease that affects the lungs, described Tuesday's announcement as a "truly momentous day".

Leanne said the announcement made by MP Simon Stevens at the conclusion of a meeting of the Commons health and social care committee "came out of the blue" and took all those who had been campaigning for better treatments for cystic fibrosis patients completely by surprise.

Two-year-old Walter Olney now has the hope of a relatively normal life thanks to a new wonder drug. (37616789)
Two-year-old Walter Olney now has the hope of a relatively normal life thanks to a new wonder drug. (37616789)

Mr Simons told the committee NHS England had signed a deal with Vertex Pharmaceuticals to make available its triple therapy for cystic fibrosis patients on the very day it received its European licence.

Leanne explained it means Walter can now hopefully look forward to a relatively normal life and described the Trikafta/Kaftrio drugs as one of the miracle discoveries in the world of medicine.

She said: "Trikafta/Kaftrio probably doesn't mean much at all to most people, but for us it means the hope of a relatively normal life for Walter and 90 per cent of all those who have cystic fibrosis. It is a truly miraculous drug and is absolutely life-changing for people like Walter.

Two-year-old Walter Olney now has the hope of a relatively normal life thanks to a new wonder drug. (37616791)
Two-year-old Walter Olney now has the hope of a relatively normal life thanks to a new wonder drug. (37616791)

"The stories we have heard coming out of America where it has been licensed for some time are incredible. People who were literally dying are out of hospital and doing well, people are no longer having to wait for a lung transplant as their only hope of living - it is amazing.

"If it can have that amount of impact on someone who is seriously sick then there is no telling what it will do for someone like Walter who, thankfully, is relatively fit and healthy.

"Initially it will be available for people aged over 12, but they will be reducing that down to people of six and over and then the over twos, so we are hoping Walter may only have to wait a few years before he can start receiving the drug.

"In the meantime he is continuing to take Orkambi the other miracle drug which we had to campaign to get free on the NHS. The fight for Orkambi was going on before Walter was born and it was only made available in October last year and Walter started taking it when he turned two in January.

"The fact we had to fight so hard for Orkambi made us worry that we might have a similar battle to get this new triple therapy drug, which is why it took us all so much by surprise when the deal was announced and it would be available.

"I cannot explain the relief and joy we feel - the current life expectancy for a baby born with cystic fibrosis today is early 40s - I'm 40 now and it broke my heart to think my son may never reach my age. This new drug has changed all that, and we now have hope that he will have a relatively normal life, with a normal life expectancy - it is an incredible feeling. I can tell you there have been many joyous tears shed.

"There is still a need for further development of drug to help those 10 per cent that will not benefit from Trikafta/Kaftrio and we pray that it won't be long before another miracle discovery is made for them."



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