DARCY GRAINGER WAS diagnosed with cystic fibrosis (CF) at the age of six.
Darcy, who lives in Coolock in Dublin, had been in and out of hospital since she was two years old. She was regularly battling chest infections, stomach problems and vomiting, and she couldn’t maintain weight.
Her parents brought her to Temple Street Children’s University Hospital, where she was finally diagnosed. She was admitted and remained there for a month.
Darcy, now 10, is doing much better, thanks to a daily regime that includes nebulisers and chest physio both in the morning and evening. She has to take up to 30 digestive enzymes every day with food.
Every three months she also goes on intravenous antibiotics to help keep infections at bay. She recently started taking Orkambi, which became available for children aged six to 11 in January.
Speaking to TheJournal.ie, Her mother Rhonda Daly recalled: “From the age of two she was just constantly sick. I was in A&E and at the GP with her a lot.
“She couldn’t keep her weight up, she used to vomit all the time, she had a lot of stomach issues. I was told it was probably asthma and she would grow out of it like many children do.
“She was just so ill, it was horrible to see her like that.
It was extremely difficult to see your child like that, she was quite withdrawn. She must have been in a lot of plain, she didn’t want to leave my side. I started to bring bags with me everywhere we went for her to get sick.
Given how consistently ill Darcy was, Rhonda believed something else was wrong. Darcy was eventually diagnosed at the private clinic in Temple Street.
“The diagnosis was a relief in a way, but also daunting. We wanted to learn everything we could about CF,” Rhonda said.
Darcy started taking Orkambi a few weeks ago and Rhonda said she “seems to have taken to it brilliantly” and has more energy.
Darcy loves sport – she enjoys swimming and plays camogie and football with Parnells GAA Club. ”She would get more tired than the average child, but she still wants to do everything,” Rhonda told us.
Every three months, Darcy has to take intravenous antibiotics six times a day (or more if she’s unwell) over the course of two weeks. Rhonda does this at home so Darcy doesn’t have to be admitted to hospital. Darcy’s lung function is currently at about 77%.
“It is very stressful having a child with CF, but at the end of the day we have to just live our normal lives … My child is a little super girl, she never complains about anything,” Rhonda said.
1,300 people
Ireland has the highest incidence of CF per head of population and some of the most severe types of the condition in the world. Almost 1,300 people have the condition here.
CF is Ireland’s most common life-threatening inherited disease. About one in 19 people are carriers of the CF gene and when two carriers have a child there is a one in four chance of the child being born with the condition.
CF primarily affects the lungs and digestive system and can greatly impact a person’s lifespan. Symptoms reported by people with CF vary significantly in severity from mild to debilitating.
The most common symptom is recurrent chest infection, which results in lung damage, with the majority of deaths occurring through respiratory failure. Many people with CF eventually need lung transplants.
65 Roses
Today is 65 Roses Day – Cystic Fibrosis Ireland’s annual awareness day and fundraising appeal.
65 Roses Day actually gets its name from the way children with the condition are taught to say the words ‘cystic fibrosis’, as they have to learn to live with it from a very early age.
Most of Cystic Fibrosis Ireland’s funding comes from public donations and organisers are hoping to raise more than €100,000 this year. Services funded include the development of new CF units around the country, specialist CF multidisciplinary posts in hospitals, patient support grants, and medical and scientific research.
You can support the effort by buying a purple rose for €2 in participating shopping centres and Spar stores across the country or by donating online.
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