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Our Story Starts in February 1994. My Grandad Robert Burns aged 57, known as Bobby was married to my Nanny Roberta, father to 4 daughters, my Mum and 3 sisters, Clara, Roberta and Denise and grandad to 9 grandchildern at this stage.
Grandad was always a hard working man & was never ill. It was unlike him to be off work ill, until he got a reocurring chest infection which was treated with antibiotics after anitbiotics. His GP sent him for a chest x-ray and on the results of x-ray was referred to hospital to see a specialist consultant.
In February he was diagnosed with Idiopathic Pulmonary Fibrosis.
The family met with the consultant who could tell them very little about the disease except Grandad would required a lung transplant. A few weeks after the diagnosis Grandads oxygen levels became unstable and soon after this he required oxygen 24/7. In September the same year Grandad lost his fight to this cruel disease with his family at his bed side.
That was 19 years ago & we thought that was the last we had seen of Idiopathic Pulmonary Fibrosis.
My Aunt, Clara Saunders 56, a wife, mum of 2 sons a daugher and grandmother, and a mother figure to her Nephews and Nieces was the eldest of my Grandads 4 daughters. Clara herself raised thousands for charities as part of a team, taking part in events such as dragon boat racing, zip wire across the River Lagan, & rowing a boat across the lough to name a few.
Around Christmas time last year Clara started to become a little short of breath, she was never one to complain and after much nagging from her family, she gave in and went along to see her GP.
In February 2013 she was admitted into hosptial after she collapsed in work. After numerous tests and almost 2 weeks in hosptial she gathered her close family together & told them that she had Idiopathic Pulmonary Fibrosis. The family were shocked and distraught. Clara told us that she had been assessed whilst she was in hosptial for a double lung transplant and her consultant had put her foward to be assesed at Freemans Hospital Newcastle upon Tyne. Over the following weeks she was taken by air ambulance to Freemans. Clara was determined to beat this evil disease that had claimed her father. Freemans also saw the fight in her but advised her that she had a small window. Within 4 weeks she was on the "Active List" for a double lung transplant and she & my Uncle packed their bags ready to go as soon as a match for her lungs became available.
Clara deterioated rapidly and on Saturday morning 25th May Clara was taken into hospital, her oxygen levels had dropped dangerously low. They stablised her with a new machine from ICU...she was great for a few days the best she had been in months. We thought once they had her oxygen levels at a managable level she could go home and there was even talk that they would fly her to Freemans hospital so she could wait for new lungs there.
Sadly Clara lost her fight on the 2nd June 2013.
On the 17th June 2013 Clara's youngest daughter Joanne gave birth 3 weeks early to a baby girl Clara Amy Saunders, A fitting tribute.
We have since found out that another sister, my Aunt Roberta has Idopathic Pulmonary Fibrosis and Scarcoidosis. How many of our family is this disease going to claim!
Our family plan to fundraise for the charity Breathing Matters which researchs these diseases and other lung related illnesses:
"Breathing Matters is the new Centre for Respiratory Research fund which is part of the UCLH Charity (Reg No 229771). It has been set up to raise awareness and to work with patients to help find a cure for lung diseases such as Pulmonary Fibrosis and others such as Bronchiectasis and Pneumonia.
The aim of Breathing Matters is to support the Centre for Respiratory Research (CRR) in their committment to find better ways to diagnose and treat respiratory diseases, but to also encourage patients, their families and friends to become actively involved as advocates, advisors & fundraisers.
The focus of the research is on ILDs and Lung Infection. Both these areas are currently under-funded in the UK and we aim to raise awareness of these little known diseases.
The CRR at University College London (UCL) is one of the world’s leading research centres for respiratory diseases. The CRR promote and conduct medical research into the prevention, treatment and cure of respiratory diseases."
Our skydive is part of our fundraising events with 10 of our family and friends taking part in the Skydive. Your donation towards fundraising is greatly appreciated.