Belfast Telegraph

Family in charity drive to help fight hereditary killer disease

By Dave Whelan

A Castlereagh family which has been rocked by a hereditary killer disease now fear that it is picking them off "one by one".

But the Burns family say they are determined to raise awareness of the condition and support other families going through the same ordeal.

Clara Saunders, the eldest of four sisters, mother of three and grandmother of four, died earlier this year shortly after being diagnosed with Idiopathic Pulmonary Fibrosis (IPF).

The family had heard the name before. In 1994 they lost their father Robert Burns to the same disease, but at the time they were told very little about it, other than there was no cure. They were not informed that it was hereditary.

Four years after the death of their father, the loss of their mother to lung cancer meant that Clara became the linchpin of the family. Her loss came as a shock but the family has suffered another major blow with the news that sister Roberta has also been diagnosed with the disease.

IPF is a condition where lung tissue becomes thickened and the lungs lose their ability to transfer oxygen into the bloodstream. There is currently no cure for the disease and treatment requires a lung transplant.

Clara had been on the active list for a lung transplant after being flown to Freeman Hospital in Newcastle upon Tyne but sadly, she lost her fight on June 2, before the procedure could take place. Just a fortnight later Clara's youngest daughter gave birth to a baby girl, naming her Clara.

The family are now planning a major fundraising drive to raise awareness of the disease and help with research into finding a cure, so that other families might not suffer the same ordeal.

This weekend they held a sponsored 10 mile walk from Seapark to Crawfordsburn Country Park with over 50 participants including Clara's husband Mark and children with a mix of family members.

Clara's sister Denise said: "My sister had a real zest for life. She was always active and always raising money for different charities through work and activities. I know that if she had had her new lungs she would have been raising money to help others.

"That's where my life is at now. We are doing this because it's what she would have done."

Denise said that the threat of the disease was a huge worry for all members of the family, who were coping in different ways.

"Clara's death was so sudden and has left us all in a state of shock. After we had lost our father we thought we had seen the back of the disease but then to find out it was hereditary and to lose our eldest sister was shattering.," she said.

"I said goodnight to her leaving the hospital that night but I never expected it to be my final goodbye."

The family recently raised £16,000 through a fundraising night for Marie Curie, which Clara had organised before her death.

Now they hope to raise over £3,000 for Breathing Matters, a charity specifically aimed at raising awareness and finding a cure for pulmonary fibrosis and lung infection.

Ten daredevils of the family are also planning to do a sponsored sky-dive in the coming months.

Denise said: "We are raising this money for everyone that might be affected by this horrible disease. There are other families out there suffering from this relatively unheard of killer disease and hopefully any funding will aid research into finding some sort of treatment."

Clara's full story can be read on www.justgiving.com/clarasaunders29 and donations are welcome.

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