By Denise James
Our story starts February 1994.
Our wonderful father, Robert Burns, 57 years, was a gentle man who just adored his family. We are a close family; my mum Roberta, 3 sisters Clara, Mary, Roberta, me and 9 grand children at that stage.
Dad was always a hard working man and was never ill. It was unheard of for him to be off work sick, until he got a recurring chest infection which was treated with antibiotics after anitbiotics. His GP sent him for a chest x-ray and, on the results of the x-ray, was referred to hospital to see a specialist consultant. In February 1994, dad was diagnosed with Idopathic Pulmonary Fibrosis (IPF).
We met with the consultant who told us very little about dad’s condition apart from the fact that there is no cure. We did the research and found that dad’s only hope was a lung transplant. After a few meetings with dad’s consultant, he gave the go ahead for dad to be assessed for transplant. We had hope!! After a few weeks, dad’s oxygen levels became unstable, resulting in dad needing more and more oxygen. Sadly, 20th September 1994 will always be a day we remember… dad lost his fight to this cruel disease with his family at his bedside.
That was 18 years ago and we thought we had saw the last of Idopathic Pulmonary Fibrosis …
Clara Saunders is our elder sister; the pinnacle of the family after losing our mum to lung cancer 4 years after my father’s passing. Not just a big sister and best friend, but a mother figure all rounded into one.
Clara, a wife and mother to 3 grown up children. For years, there was no granchildren, then over the last 2 years, they all came along like the No 6A bus; 2 grandsons, a grandaughter and her daughter expecting their second end of June 2013.
Clara loved her job and within her work always took part in charity events raising thousands for different charities as part of a team. Events such as dragon boat racing, zip wire across the River Lagan, rowing a boat across the lough, and a ladies driving day for Marie Curie to name but a few.
At Christmas 2012, we noticed Clara was 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 at work. After loads of tests and almost 2 weeks in hospital, she gathered my sisters together and told us that she had Idopathic Pulmonary Fibrosis. We 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 assessed 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 our 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” and bags packed ready to go. She was deteriorating rapidly and, on Saturday morning 25th May 2013, was taken into hospital. Her SATS (oxygen levels) had dropped dangerously low. They stablized her with a new machine from ICU. She was great for a few days – the best I’d saw her in months. We thought once they had her oxygen levels at a manageable level she could go home, 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 2nd June 2013.
On 17th June 2013, Clara’s youngest daughter gave birth 3 weeks early to a baby girl – Clara Amy Saunders … a fitting tribute.
We have since found out that another sister has Idopathic Pulmonary Fibrosis and Sarcoidosis.
How many more of our family and others is this disease going to claim?
Our family and friends plan to fundraise for Breathing Matters which carries out research into these diseases and other lung related illnesses by doing a 10K walk, a skydive and a blowdrying day in our salon: If you would like to support us, please visit our Justgiving donation pages:
http://www.justgiving.com/clarasaunders29
http://www.justgiving.com/PhilsSkydive2013
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