The friends and family of a baby from Manea who has cystic fibrosis have written letters to the Prime Minister urging for new medication that could prolong his life to be available on the NHS.
Four-month-old Walter Olney was diagnosed with the debilitating condition at only 13 days old.
The little one has to have medication multiple times throughout the day and night, which seriously impacts on his quality of life.
He also completes daily sessions of PEP (Positive Expiratory Pressure therapy) which help him to strengthen and clear his lungs.
Heartfelt letters have been put together by Walter’s family and friends asking for Theresa May to support the campaign for access to new medicines for those with cystic fibrosis.
It comes as children and adults across the UK wrote letters which were handed in to 10 Downing Street last Wednesday (May 16).
One of the medicines that could help Walter and other sufferers is Orkambi.
Leanne Olney, Walter’s mother, said despite what he goes through in the day, every morning he ‘wakes up with a beaming smile on his face’.
The 36-year-old social worker said: “I am so impressed with him and given what he goes through in the day all the medicine he has to have he is such a happy baby. He wakes up and has this beaming smile on his face.
“At the minute he is not old enough for Orkambi but when he turns six this could be something he has. It is all about the bigger picture and ultimately it could help so many people.
“If we were living in other European countries we could get this medication – so it doesn’t seem fair.
“We have been overwhelmed from the support from our family and friends and there is a real momentum behind this, which is great.”
Walter’s friend Megan Hodgson, aged 6, from Over, Cambridgeshire, wrote in her letter: “Orkambi is a drug that can make the lives of some people with Cystic Fibrosis a lot better. Walter deserves a chance in life and the government can make that happen.”
Orkambi is a precision medicine that nearly half of people with cystic fibrosis - including children aged six and over - could benefit from in the UK.
While conventional cystic fibrosis treatments target the symptoms, precision medicines tackle the underlying genetic mutations which cause the condition.
Orkambi is not a cure, but it has been found to slow decline in lung function.
It has also been shown to reduce chest infections requiring hospital treatment by up to 61 per cent.
David Ramsden, chief executive of the Cystic Fibrosis Trust, said: “Cystic fibrosis is a terrible condition.
“Significant advances in medical science mean new precision medicines are available or in development that have the potential to transform the lives of people with cystic fibrosis and we urge the Prime Minister to ensure that they are available for the thousands of children and adults who have been waiting far too long.”
A spokesperson from Vertex, a pharmaceutical company backing the campaign, said: “When hundreds of children with cystic fibrosis are compelled to write to the Prime Minister because they cannot access the first medicine to treat the underlying cause of their condition, it sends a clear signal we do not have time to waste.
“We share the cystic fibrosis community’s growing sense of urgency and in recent weeks the clinical community has also written to the NHS leadership asking for an urgent resolution.
“We will call on NHS England to be ready to significantly progress discussions when we next meet on May 25.”
For more details on cystic fibrosis and the Trust’s access to medicines campaign visit www.cysticfibrosis.org.uk
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