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Louise puts the sweet in charity

Nine-year-old Louise Cusack with her three-year-old sister, Amy, who was recently diagnosed with cystic fibrosis. This weekend Louise will be raising money for TLC4CF by providing a lemonade stand outside their home. Photograph by John Kelly

THEY say when life gives you lemons, make lemonade. Well one young Ennis girl has done just that in a bid to raise funds for TLC4CF, the regional charity dedicated to improving services for those with cystic fibrosis, after her little sister was diagnosed with the condition last Christmas.
Nine-year-old Louise Cusack has decided to set up a lemonade stand outside her house at 27 Rathban on the Tulla Road this Saturday from 2pm. All funds raised from the stand will go towards helping people with cystic fibrosis.
Louise’s mother, Nicola, said she is very proud of what her daughter is doing not only for her sister, Amy, but for others with the illness.
“Louise got the idea for the lemonade stand when she and her aunt were trying to figure out things to do for the summer holidays. It was going to be to make some pocket money for herself but then she decided it would be nice to give the money to charity. She always wants to put money into collection boxes for charity and now she has this charity to focus on because of Amy. We’re not directly involved with TLC4CF yet because we’re just new to cystic fibrosis and we’re waiting until we get a bit used to everything ourselves first. But we will be in the future and are going to get involved with their parents’ association. We wanted to do whatever we could to help those with the condition.”
Nicola is hopeful that as many people as possible will turn out in support of the stand, which will also be making homemade cakes and cookies. Louise and her friends have been out and about in the neighbourhood handing out leaflets to let people know about it.
“TLC4CF are very encouraging in helping you organise fundraisers, they tell you that even if you can raise €50, it all matters, everything counts. We have family and friends lending support and hopefully, the weather will be good so we will have a good turnout. And everything is only €1, so it’s good value.”
Nicola explained that three-year-old Amy was diagnosed with cystic fibrosis last Christmas, after being sick for much of her young life.
“She was always sick as a young baby and we didn’t know why, she had chest infection after chest infection. We had a cot for her and she never slept in it, she had to sleep in her pram propped up with pillows because she kept coughing and then she would wake up with the coughing.
“She was in hospital for two weeks before the diagnosis, that’s when they realised that she could have CF. She was in a high-dependency unit for a week and it was very worrying. She was just lying in the bed asleep all day and I was thinking, ‘what the hell is wrong with her?’ When she got a bit better, they tested her and we got the diagnosis. It was a big shock for us, nobody in our family had ever had CF, she’s the first. We’ve been asking grannies and granddads and there hasn’t been anyone.”
Nicola said the family knew little about the condition before the diagnosis. “It took a while for it all to sink in. The only thing you think of when you don’t really know much about it is chest infections and coughs but it affects your whole body. She has to take enzymes every time she eats because her pancreas doesn’t work properly and she can’t absorb fats and proteins properly. She has to eat a very high-calorie diet because her body uses up more energy. We are trying to get her weight up, she was really thin when she was sick but she is putting it on now gradually.”
When Amy was first diagnosed, Nicola was pregnant with Sophie, who is now seven weeks old. Nicola said it was particularly difficult for her when Amy had to have x-rays during her treatment and she was unable to go into the room with her.
“Amy is very, very brave. She has had to have lots of blood tests, scans and x-rays and she has to do physio, that’s why we got a trampoline for the back garden because it’s great for her lungs. When she had to go for x-rays, she was pure brave going in with the staff instead of me. And she was so young that it was hard for us to explain to her what was going on, why she was getting prodded with needles and having tubes put in. Now it’s much easier for her and she says her doctor is the best in the world.”
Amy is due to start playschool in Barefield this September, with the family determined not to let her illness stop her from having a normal life.
“These days, you wouldn’t know she was sick at all to look at her. Now that we know what’s wrong with her, we know how to deal with it and treat it properly. She has to take antibiotics a lot and they have been working great. Before, she was always getting sick but now she doesn’t. And now she is sleeping in her own bed all night long. She is so used to it that she doesn’t know any different, she thinks it’s normal. She keeps talking about when her little sister grows up and she has to take her enzymes. We are a bit worried about her going to school but we don’t want to wrap her in cotton wool because she would have no life. And the school have been great.”
The lemonade stand isn’t the first thing Louise has done to help her sister. “Louise is a great help with Amy. Even when we go to hospital and if Amy is a bit scare of something, she is there. Amy had a scan done once and she was petrified and Louise lay down and had it done first so she wouldn’t be afraid. It really helped, Amy really looks up to Louise.”
Nicola told us that despite Amy’s condition, both she and her husband, Paul, are optimistic about her future. “The treatments for CF are improving all the time and it’s very different to even a few years ago. There are people with CF in their 40s now with their own children. We’re staying strong and positive. From the very start, we thought the only thing we can be is positive, there is no point not being,” she concluded.

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