The race is on to get a drug approved on the NHS for two brave brothers who suffer from a rare genetic condition.
Five years ago, Archie, 13, and Isaac Eaton, 12, began weekly trials of a pioneering drug which was proven to stabilise their degenerative condition.
They suffer from the growth-restricting Morquio A disease which affects only 3,000 people in the developed world.
The treatment replaces a missing enzyme and without it their growth is severely limited.
Archie stands at just over one metre while Isaac is just under a metre.
The trial ended in May last year and since then the boys have been receiving the drug, marketed as Vimizim, on a compassionate basis.
But according to the boys' mum Anna, 43, from Longhope, the company has written to say that this free treatment will be withdrawn later this year.
"If Archie and Isaac were to stop receiving this drug, the consequences would be devastating," said Mrs Eaton.
Enzyme replacement therapy Vimizim received marketing approval for treating the disease which is a lifelong condition with no cure.
The majority of people rarely live beyond their 30s and as well as skeletal changes and mobility issues, it can cause respiratory problems and heart failure.
Vimizim has shown, through a worldwide clinical trial, that it improves walking and the ability to bath, dress and live independently.
Before the treatment can be used by the NHS, it has to be approved by the National Institute for Health and Clinical Excellence.
However, the process used to evaluate whether certain drugs are signed off proved to be fundamentally discriminatory against treatments for very rare diseases forcing the Government to scrap the system and come up with a new one in December last year.
Mrs Eaton, whose children go to Dene Magna School, explained that due to the rarity of the condition it is treating Vimizim has a very high cost per patient.
"The boys have an injection every week with the cost estimated to be around £20,000 per child per week," she added.
"People have said to us can we do fundraising but unfortunately it is the sort of figure that can only be funded at national government level."
The race is now on for Mrs Eaton and the families of the 80 or so patients in the UK with this condition to get the Vimizin approved on the NHS before the drug company withdraws the treatment.
"It should not be the case that the rarity of the condition makes it harder to get treatment approved," she added.
"The treatment is life extending and life enhancing for Archie and Isaac and all the other patients, meaning they can live a fuller, healthier life without pain and reduced risk of life-threatening illness such as severe chest infections."
Mrs Eaton has contacted her MP Mark Harper and is one of many parents across the country who has written to the Prime Minister stressing the urgency for him to make a decision on the process of evaluating treatments.
She has also launched a Facebook campaign, Archie & Isaac's Fight for their Future, to raise awareness of the ongoing fight to get the boys treatment.
"We urgently need a decision before parliament breaks for the general election at the end of March not just because time is running out for the boys but also because it could be a brand new MP and a brand new Government in place meaning we would have to start the process all over again," added Mrs Eaton.
