It’s every parent’s worst nightmare- watching your child struggling, severely ill, surrounded by medical professionals. Unfortunately, that has been the reality for Michelle Hoy and her daughter Katie, who suffers from severe asthma, on numerous occasions. Michelle and Katie, from Belfast, are speaking out about their experiences in support of local health charity Northern Ireland Chest Heart and Stroke’s asthma campaign to raise awareness of the condition, how dangerous it can be and the importance of the correct use of inhalers.
While many of us may think of asthma as being a minor childhood condition that causes the odd cough or wheeze, the reality is that asthma attacks can kill. It is also much more prevalent than people might think, with approximately 1 in 10 people in Northern Ireland having asthma, including 36,000 children.
Michelle explains; “From she was just 8 weeks old Katie was constantly wheezy. She was always in and out of the GP surgery and being referred to hospital for x-rays. When Katie was about 14 months old she developed a chest infection and she was prescribed antibiotics. Katie was given three different types of antibiotics, but the infection lasted from November until January, she just could not get rid of it. In the end the GP said they couldn’t give Katie anything further and she would have to go to hospital. Katie was treated at The Royal Belfast Hospital for Sick Children and that visit resulted in her being referred to the hospital’s asthma clinic. Katie was very young for this to happen as most children aren’t referred until they are around 5 years old, but it was clear Katie needed specialist treatment.”
Katie started attending the hospital’s asthma clinic and was prescribed inhalers, which the family ensured were used correctly, but as she got older Katie’s asthma got gradually worse. “She was having asthma attacks everywhere,” says Michelle. “Once we took a day trip to Murlough beach. Katie had been in good health, she hadn’t been wheezy or shown any symptoms, but she had a full asthma attack on the beach. That was the scariest day we ever had. There was absolutely no warning.”
“The doctors later told us Katie had gone from being asthmatic to being a brittle asthmatic which means there are no signs an asthma attack could be imminent. No lead up of a few days of not feeling great, no wheezing and so on. Knowing Katie could have an attack at any moment, with absolutely no warning, is terrifying and it is why Katie is never without her medication. She always carries a little bag with her inhaler, so she has it in case she needs it- whenever, wherever.”
“Another frightening attack happened when we were on holiday at our caravan in Newcastle. Katie had a severe asthma attack not long into the holiday and ended up being admitted to Daisy Hill Hospital in Newry for a week.”
That hospital stay was sadly just one in a long list for Katie. Michelle explains; “Katie has been admitted to hospital so many times from she was a baby up until about a year ago. It was always so frightening, but the doctors have never been able to diagnose why Katie’s asthma is so severe. For most kids with asthma, they find it gets worse in either winter or summer, depending on their individual triggers. With Katie, it makes no difference what time of year it is, she can have bad asthma attacks the whole year round which is quite unusual.”
“Katie has a dog allergy, a peanut allergy and different tree allergies but her asthma has never been linked to these triggers alone and nobody has ever been able to tell us why she is so badly affected.”
Michelle continues; “The doctors at the asthma clinic tried everything with Katie over the years- different inhalers as well as steroids but nothing was working so she was referred on to a consultant. Katie was then prescribed a new and expensive biological therapy called Dupilumab that is delivered by injection. Dupilumab has been shown to work well in both asthma and eczema when standard therapy has failed. Katie gets this on a fortnightly basis, and it has been life changing for her.”
“Katie hasn’t been hospitalised by an asthma attack since starting the Dupilumab injections. Also, for the first time in over 2 years, Katie has been able to stop taking steroids on a constant basis which is great as there can be side effects of taking these long term.”
“The health impact for Katie has obviously been massive but the life impact has been just as big. We no longer have to go to the asthma clinic to get the injections as we can now administer these at home. This is great as we had to take Katie out of school for a full afternoon every second Wednesday for the injections as the process took quite a while. Katie has missed a lot of school growing up because of her asthma so this is a big step forward.”
“Also, it has only been in the last six months that Katie has been able to properly hold down any hobbies. With being constantly unwell, Katie was never able to attend any afterschool activities frequently enough to really be part of a team and properly enjoy the activity.”
“Katie has been going to gymnastics on and off for about four years. Now, for the first time, she is able to make the class on a weekly basis, rather than maybe once a month like before. Because of this, Katie’s gymnastics skills have really improved, and she can do all the moves and tricks the others are doing. She is really happy about this and it’s just fantastic to see her enjoyment. It is amazing to see her finally being able to lead a more normal life, just like other kids her age. Finally finding a treatment that is helping Katie has given her a whole new lease of life.”
Although starting the Dupilumab therapy has made a massive difference to the management of Katie’s condition and the impact it has on her daily life, Katie’s inhalers and adherence as to how she takes these is still vital. Michelle explains; “Katie must use her preventer inhaler every day and she takes her reliever inhaler absolutely everywhere she goes, even if it’s just a quick trip to the shops. Having inhalers handy can be the difference between life and death and we must always be ready for an emergency. We are so aware of how quickly an attack can come on, and with zero warning. We would never go anywhere without Katie’s inhalers; it would just be far too dangerous and put her at massive risk.”
Even though she is just 12 years old, Katie wants to speak out about the impact having asthma has had on her life. She says; “I have suffered with asthma my whole life. I have always felt different from my peers as I have never been able to lead a normal life and participate in normal activities with my friends. Before, most plans I made with my friends and family ended up being cancelled due to my asthma flare ups. Things like planning birthday parties, attending gymnastics and Gaelic. Since I started the Dupilumab injections I can lead a more normal life and continue with my afterschool activities. Asthma is not stopping me. I don’t forget my asthma is severe though and always make sure to take my medication twice a day and bringing my inhalers with me when I'm out with friends and family.”
Michelle concludes; “Asthma has been Katie’s life from she was no age and living with it has been terrifying at times. Like the times Katie has woken out of her sleep having an attack and has had to shake me awake as she couldn’t speak. There have been some horrendous experiences for Katie, but she never complains, she just gets on with things. Although Katie will probably never be rid of asthma, she at least now has a chance to live life a lot more normally. She is an absolute trooper, and I couldn’t be prouder of her.”
“People just don’t realise how dangerous asthma can be and that’s why we’re sharing our story and supporting Northern Ireland Chest Heart & Stroke’s asthma campaign, to spread awareness. Asthma should be acknowledged more-it’s not just a bit of wheeziness, it can be fatal. The brutal fact is people die every day from asthma attacks. We wanted to share our experiences to play our part in helping raise awareness and get people to take asthma seriously.”
For further information and support about asthma visit, www.nichs.org.uk/asthmacankill
