On Monday the 2nd June, 2014, heaven gained a true angel and we lost a star. Margaret (Maggie) our darling Mother, Nanny and friend to so many, took her last breath at St. Mary's hospital, London after a long battle with Idiopathic Pulmonary Fibrosis (IPF). She was surrounded by her family and died peacefully in our arms after struggling for two weeks in hospital. We are all devastated to lose her but it was a relief when her suffering was over and we are comforted by knowing she is with her late husband, Terry once again.

Until Mummy/Nanny/Margaret was diagnosed with IPF three years ago we had never heard of the disease and we never fully accepted how debilitating it would be. She had never smoked. Of course we knew the disease was very serious and we worried desperately about what the road ahead had in store for her, but we still held out hope that it was slow progressing and she would be with us for years to come. Last September she didn't feel very well and we got her in to see her specialist who told us that her disease had got worse and that she would require oxygen to support her lungs. Seeing someone you love attached to a machine for 24 hours a day is so hard but we adapted. We tried to help keep her active and throughout February to April she seemed to improve. We got her on Pirfenidone, a recently launched drug which is supposed to help slow down the progression of the disease, but the side effects were horrendous. 

On Monday the 19th May she took a turn for the worse and we couldn't manage her oxygen levels with the machine she had been using so she was rushed into St. Mary's hospital, London. We never imagined that she would never return home. We were floored when the doctors told us they thought her disease had entered a phase they referred to as exacerbated deterioration (end stage) and that we should call any family members to the hospital. We still did not want to give up hope and we prayed that it was an infection which would be reversible, part of it was but the disease was still eating away at her lungs. She improved over the course of the days that followed but two weeks after going into hospital she lost her battle. During her time in hospital she kept telling the nurses and us how much she wanted to raise money to fight this cruel disease and so it is our duty to carry out her wish and you can all be a part of this. Imagine being under water and the relief of the breath you feel when you surface, IPF sufferers who reach the end of the disease never feel this, it is like they never surface. 

As this is a rare disease (but cases are rapidly increasing) there is very limited funding that goes in to trying to find a cure, prevention or treatment. We want to change that and help others in Margaret's memory and this is just the beginning. 

We appreciate your support from the very bottom of our hearts. Thank you.

‘Interstitial’ means the disease affects the ‘interstitium’, a lace-like network of tissue that supports the alveoli (air sacs) in your lungs. ‘Idiopathic’ means the cause of the condition is not known.

When you have IPF, inflammation or scar tissue builds up in your lungs, making them thick and hard. This build-up of scar tissue is called fibrosis. As your lungs become stiffer and lose their elasticity, they are less able to take oxygen from the air you breathe. This is a debilitating and fatal disease with an average prognosis of between 1 and 3 years. There is NO cure. One in five cases are hereditary.

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