A Mid and East Antrim councillor has told of her two-year-old grandson’s battle with cystic fibrosis, and her family’s fight to raise awareness of the incurable, life-threatening condition.
Councillor Beth Adger MBE said little Ollie’s diagnosis, when the youngster was aged just four weeks, turned the lives of the entire family upside down.
And she told how Ollie’s mum and dad live in constant fear their “wee star” could pick up an infection every time he leaves his home.
Cllr Adger opened up about Ollie’s condition on the eve of Mid and East Antrim Borough Council illuminating civic buildings yellow to shine a light on cystic fibrosis. Friday 22 June is Cystic Fibrosis Trust’s Wear Yellow Day.
She said: “I am delighted Mid and East Antrim is helping to raise awareness of cystic fibrosis - a genetic condition caused by a faulty gene that affects the movement of salt and water in and out of cells.
“Most cases of this condition are now detected soon after birth through the newborn blood spot test.
“It is estimated that one in every 2,500 babies born in the UK has cystic fibrosis.
“You are born with cystic fibrosis and cannot catch it later in life, but one in 25 of us carries the faulty gene that causes it, usually without knowing.
“Our family knows only too well the devastation this can cause. My grandson Ollie was born in April 2016.
“Following the routine heel prick test, he was diagnosed with cystic fibrosis at four weeks old. We had heard of cystic fibrosis but didn’t know all that much about it.
“Ollie’s parents certainly didn’t know they were carriers or that it was in our family genetics.
“The diagnosis came as such a shock as our family’s little baby boy was just perfect.
“Immediately after the health visitor gave the family the diagnosis they were put in contact with a consultant at the Royal Belfast Hospital for Sick Children and an appointment was arranged the following day for mum and dad to be advised on his treatment and what the future held.
“This was such a traumatic time of all our lives.
“The staff at the Belfast Health and Social Care Trust from that day have been a great support. Ollie’s parents attend on a three monthly basis so that Ollie can be checked on his progress.”
The condition causes sticky mucus to build up in the lungs and digestive system. This causes lung infections and problems with digesting food.
People with cystic fibrosis can also develop a number of related conditions, including diabetes, thin, weakened bones (osteoporosis), infertility in males, and liver problems.
Symptoms usually start in early childhood and vary from child to child, but the condition gets slowly worse over time, with the lungs and digestive system becoming increasingly damaged.
Treatments are available to help reduce the problems caused by the condition and make it easier to live with, but sadly life expectancy is shortened.
Ollie’s dad Rodney said: “Ollie is pancreatic insufficient which means that he cannot digest fat. He has to take enzymes with everything that has a fat content.
“If he doesn’t take the required amount of enzymes he can have severe stomach pains.
“On a daily basis he can take 12 enzymes a day, and this was will increase with his age and weight gain.
“He also takes antibiotics three times a day to help prevent any bacteria growing in his lungs and a concoction of vitamins as he does not get the goodness out of his food.
“He is on a nebuliser once a day and we do physio once a day, which consists of bouncing on a gym ball and breathing into a mask (which has a resister on it and which means he has to blow harder).
“We also have to pat his lungs and then vibrate them to loosen any mucus which has built up. We do all this daily just to keep him well.
“When we are out and about there is a constant fear of people who are coughing or have a cold or flu as Ollie is so susceptible to infection and when ill antibiotics change, physio is increased and there is a chance that he will be admitted to hospital for up to two weeks on IVs (intravenous therapy).
“At present Ollie is doing amazing and is a happy boisterous, normal two-year-old boy who loves getting up to mischief and takes his daily routine in his stride as it is all he has ever known.
“He is our wee star!”
The family shared their story to raise awareness of cystic fibrosis.
They are also backing a campaign to have a drug not currently available in the UK distributed by the NHS. While the drug does not cure cystic fibrosis, it is said to halt the decline in a patient’s lung function.
For more information, visit: cysticfibrosis.org.uk/