Covid-19: Mother speaks of scary times for daughter with cystic fibrosis

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It is a “scary time” for Elaine O’Halloran whose youngest daughter, Sarah, has cystic fibrosis.

These days to minimise the risk of catching Covid-19 Elaine relies on family and friends to do the shopping and collect medicines for Sarah.

“Even though we are in isolation like everyone else in the CF community, life for people with CF continues,” said Elaine from Dublin.

Three-year-old Sarah needs physiotherapy and medication every day to keep her well.

Elaine said the CF team at Tallaght Hospital have been a huge support. She knows they are always there for Sarah.

“They are always at the other end of the phone if I have any worries and can advise me when I struggle to see through these strange times.”

One in two people with CF have admitted in a survey that they fear contracting Covid-19 and those most afraid already have severe respiratory problems or are post-transplant.

Their fears are compounded by the lack of international data on the effects of Covid-19 on people with CF.

Elaine has learned to take each day at a time but is glad that Sarah and her big sister, Katie, 10, who does not have CF, are happy in each other’’s company.

“It is not as if we are all sitting at home thinking about Covid-19 24/7. We just get on with it.”

Sarah started her Orkambi medication a year ago and is doing well. She no longer suffers from stomach pains and has gained weight.

Elaine said Cystic Fibrosis Ireland has played a major role in helping her daughter live a healthier and happier life.

“Sarah has lots of different hobbies – including dancing and singing, and she has followed in the footsteps of her older sister, Katie, with her love of football.”

She urged people to support CFI’’s virtual 65 Roses Day tomorrow by donating online at 65RoseDay.ie.

Ireland has the highest incidence of CF in the world, with almost 1,400 people diagnosed with the disease. It also has some of the more severe forms of CF.

CFI chief executive, Philip Watt, said they conducted the survey to highlight how the vulnerability of people with CF is at a different level.

“People with CF are resilient but this resilience is being severely tested by the Covid-19 crisis,” he said.

Mr Watt said CFI is helping people with CF and their families cope during this very difficult and challenging time.

As well as on-line counselling it is also providing patient grants for those experiencing financial difficulties.

CFI depends on the public for almost all of its funding.