My name is Lizzie Baily and I have Congenital Muscular Dystrophy and Scoliosis. I have been under the care of the wonderful respiratory support team at the Royal Brompton Hospital for over 20 years and they have helped me to keep strong and healthy with my BREAS ventilator which I use overnight.

The team also looked after Alexandra (my sister who also had CMD and died in 2015) and some of my friends are patients too. It is so reassuring to know that Professor Simonds is there if I have any health concerns, and since 2017 I have also been supported by Debbie Field from the Community Outreach team. This has been fantastic as I haven’t had to travel to the hospital to have my blood gases checked!

In May, I watched a Channel 4 news report about the work of some of the incredible staff who are working to treat very unwell patients with Covid-19 in ICU at the Royal Brompton Hospital so I decided to raise money to help the hospital get the vital equipment they need to help patients with Coronavirus.

I have always loved being in warm water and hydrotherapy is a great help for people with Muscular Dystrophy! We were given our above group swimming pool in 1989 by my father’s army regiment who recognised the need for swimming as physiotherapy. The pool has moved house with us 3 times and is now part of our smallholding in Sidlesham, West Sussex. It is wonderful to swim with all our animals looking at us!

Since the beginning of lockdown I have been unable to see my physios apart from on Zoom appointments. Every day (weather permitting), I am doing my hydrotherapy exercises which I made up myself during my half hour in our pool. These really help me to keep my body healthy, especially my respiratory system! My goal is to do 100 swims and raise £3000. A video of my workout can be found on YouTube by searching “Lizzie’s Swimming Challenge” Luckily the summer weather has been really great so I hope to reach my target next week (early September).

During my weekly physio sessions before lockdown, I did a lot of respiratory exercises which undoubtedly have helped me to stay as healthy as possible. It was really important for me not to deteriorate while I was unable to see my physios so as well as the swimming I have been doing daily breathing work using several tools.

The PowerBreathe is for inspiratory muscle training and the Flutter is useful for keeping my airways open by blowing hard. I have also started using a Flowball where I have to keep a polystyrene ball afloat by blowing out as long as possible, and my most challenging tool is a Respiron – an Incentive Spirometer where my suck is supposed to lift 3 balls up the tubes. It is really tricky and I normally only get the first ball halfway up! After I have completed my regime each day with two of these devices, I use my Oximeter to check my heart rate and oxygen saturation level. This reassures me that I am keeping my levels stable.

Another lockdown activity I also really enjoyed was singing with Gareth Malone’s Great British Home Chorus on YouTube; the warm up exercises were another great way to give my lungs a good work out.

Professor Simonds told me some years ago that swimming and singing were excellent ways to keep the respiratory system working well, so I hope I can keep both up as long as I can. My dream is to have a hoist to lift me in and out of the pool, and a telescopic cover over it so I can continue my hydrotherapy when the weather is not so good!

I was so surprised and delighted to find out on 23rd June that the Prime Minister had chosen me for a Point of Light Award for my Swimming Challenge and work for Wellspring West Sussex which I have been involved with since 1999 (supporting families with special needs and disabilities and those who work with them)!

During lockdown I have missed being able to have face-to-face contact with the families and special needs children I work with for Wellspring West Sussex, but through our charity website and Facebook I have enjoyed keeping in contact with many of them.

I feel very honoured to receive this Award and I have been overwhelmed by the generous support I have received for my Swimming Challenge. I am really happy that I have been able to raise money for the Royal Brompton Hospital whose respiratory team look after me so well.

We’re pleased to reveal that Lizzie smashed her fundraising target raising £3,320 for our Emergency Covid-19 Appeal. Thanks to Lizzie, and all those who created fundraising challenges in 2020, we were able to support both the wellbeing of our staff and their patients during the pandemic. You can read about your impact in this article.