In January 2015 our daughter Lyra was born.

We thought we’d had an entirely typical pregnancy and arrived at the hospital excited to meet our baby and take her home with us. 12 hours later following an emergency caesarean section, Lyra was rushed into the Neonatal Intensive Care Unit (NICU). Initially, it was expected to be a stay of a few days, then perhaps a week or two, but it ended up being  a stay of seven and a half weeks.

It was after five weeks in NICU that we were given the life-altering news that Lyra had a rare genetic condition called Prader Willi Syndrome (PWS). We’d never heard of it and it was pretty apparent that the clinicians knew very little about it either, which left us having to find out about it via Google. The first helpful resource we could find about PWS was the website of the Prader Willi Syndrome Association (PWSA), which had lots of useful (and positive!) information. PWS has a very long list of associated symptoms, which can make for difficult reading, but the extent of any symptoms varies from person to person with PWS.  This means, we don’t know exactly how PWS is going to affect Lyra. It’s a waiting game and that’s a tough wait!  Up to this point, the main challenges for Lyra have been related to feeding, breathing, mobility, learning and language development.

The biggest impact is yet to come for Lyra, and our family.  At some stage in the next few years Lyra will lose the ability to control her appetite.  When we reach this stage, Lyra will be left with an insatiable appetite 24 hours a day, seven days a week.  It won’t matter what food she eats, she’ll never feel satisfied, and we’ll never be able to help her to satisfy her hunger.  To manage this, we have to be incredibly routine and prescriptive with planning Lyra’s diet and ensure as a family that we all have the right attitudes about food and diet. By doing all this, while it won’t fix Lyra’s appetite, we hope it will help her to manage her anxiety about food.

Before we had Lyra, we’d never heard of PWS and I’m guessing you know little about it too. That’s an important reason for me to get out on my bike and raise some money.  As a rare and pretty unknown condition, it is a struggle for charities and research teams to get sufficient funds to enable vital research to take place.

Medical research teams across the world are looking at why PWS causes an insatiable appetite and are searching for ways to manage or resolve it.  As PWS is a rare condition, these teams struggle to get the necessary financial backing to support their research. Therefore, any money raised is both vital and invaluable to the work they do.

The PWSA is a wonderful charity, supporting families dealing with PWS as well as supporting research into the condition. That’s why I’m doing everything I can to raise some money for them, and why I’m aiming to finish the Ride London 100 in under five hours.

Please remember, though, it isn’t all doom and gloom for us. Despite all her challenges Lyra is one of the happiest little girls you’ll meet, and an absolute joy to be around.  She can easily brighten any day and is a firm favourite with everyone she meets, not to mention the various medical professionals that work with us.  With the help of the PWSA, the NHS and our friends and families, we’re looking to the future positively, and loving every moment as a family. Please help us fight for a bright future for people with PWS by donating to my fundraising drive for PWSA.