Our story starts February 1994.Our wonderful father Robert Burns 57yrs 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 was neveri ill. It was unheard off for him to be off work sick, 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 a referred to hospital to see a specialist consultant .Feburary 1994 dad was diognosied with Idopathic Pulmonary Fibrosis (IPF).We met with the consultant who told us very little about dad's condition apart from there is no cure. WE did the researched and found that dad's only hope was a lung transplant. After a few meeting with dad's consultant he gave the go ahead for dad to be assessed for transplant. We had hope!! After a few weeks dads oxygens 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 bed side.
That was 18yrs 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 loosing our mum to lung cancer 4yrs 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 come along like the No 6A bus, 2 grandsons, a grandaughter and her daughter expecting their second end of June 2013Clara 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.
Christmas last year 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 addmitted into hosptial after she collapsed in work. After loads of tests and almost 2 weeks in hosptial she gathered my sisters together 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 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 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 deterioated rapidly and Saturday morning 25th May was taking 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 id saw her in months. We thought once they had her oxygen levels at a managable 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 the 2nd June 2013.17th June 2013 Claras 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 Scarcoidosis.How many more of our family and others is this disease going to claim.
We plan to fundraise for a charity called 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 Interstitial Lung Diseases such as Pulmonary Fibrosis and other Respiratory Infections 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 or even participants).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 first fundraising event will be a sponsered 10k walk. All the family friends and grandchildren can take part. Your donatations will raise fatal funds to raise awarness and aid Breathing Matters to find treatments and hopefully one day soon a cure.
Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity. So it’s the most efficient way to donate – saving time and cutting costs for the charity.So please dig deep and donate now.