How Asthma + Lung UK’s support groups have made me feel less alone

Mum of two, Rebecca Grandison’s son Wilf’s has severe asthma, which controls every aspect of his life. She says it’s hard for other parents to understand the challenges their family face as a result. She’s recently starting attending our monthly parent and carer network meetings, a space for parents and carers of children with all lung conditions to come together. Here she tells us how connecting with other parents has been really helpful for her.

My son Wilf can’t enjoy sleepovers and school trips like other seven-year-old boys. In fact, he barely makes it through a day at school without having an asthma attack.

Wilf has severe asthma which means that even his inhalers and daily steroids can’t completely control his symptoms, and it’s unusual for him to manage an entire week in the classroom. As he gets older, Wilf is becoming more aware of everything he cannot do, and it breaks my heart that he can’t tear round the playground with a football like his friends.

Since he was diagnosed with severe asthma two years ago, Wilf has been hospitalised eight times, and his symptoms are incredibly difficult to control, as he has many different triggers. In the spring and summer, pollen is a constant concern, and during the autumn and winter, the cold and viruses seriously affect his breathing.

As well as his inhalers, Wilf has to take oral steroids every day, which as a parent I hate, as the medication makes him feels sick and plays havoc with his emotions. I also think they have slowed down his growth, as he used to be tall for his age, but is now one of the smallest kids in his class.

Living in constant fear

It’s hard for other people to understand the challenges we face as a family. I had to give up a career I loved as a teacher, and can’t work as I always need to be at hand in case Wilf has an asthma attack. We often have to cancel social events at the last minute too. Of course, these are minor issues compared to the constant, nagging fear that my beautiful boy could at any moment become incredibly unwell, and might never get to lead the life that he deserves.

I think people tend to think: It’s only asthma, lots of kids have that, He’s bound to grow out of it. But what they don’t realise is that severe asthma is something totally different, as it’s so hard to control. I almost wish it could be given another name, and then people might take it more seriously.

Staying positive

At the moment, Wilf is waiting to go on a trial of Biologics drugs at Imperial College, London, which has been funded by Asthma + Lung UK. I am praying that these drugs, which are very targeted and help to reduce inflammation in the body, might make life easier for us.

For now, I’m determined to stay positive and to learn as much as I can about severe asthma. Recently, I have started attending Asthma + Lung UK’s monthly parental carer network meetings which have been a useful resource, with fascinating talks from respiratory clinicians.

Just being able to talk about Wilf’s condition has been a real release, and I hope one day to meet another parent in the same boat as me, because living like we do can be so incredibly isolating.

Our parent and carer network is open to anyone who cares for a child with a lung condition. It’s a safe and friendly space to come together and connect with others who understand. We run free monthly events with expert speakers on subjects relevant to your child and their lung health. Find out more and sign up for our free events.