Our son Max who now likes to be known as his full name Maximus is almost 11 years old. Maximus has Prader Willi Syndrome. During the hours Maximus is awake we lead a PWS life as a family. Even Tutu his little sis, aged 7, is growing into a fantastic little carer to her brother.

Prader-Willi syndrome is a rare, complex genetic disorder that causes motor developmental delays, a mild to moderate learning difficulty and emotional and social immaturity, leading to challenging behaviour.  During childhood, an overwhelming and insatiable chronic appetite develops, which leads to food seeking and life threatening obesity. Imagine your son or daughter always craving more and more food and having to lock your cupboards and your kitchen to keep them safe.  This is just a snapshot of PWS.

So my mission is to continue to raise awareness of PWS and raise funds to help keep the PWSA charity afloat.  They require £350,000 a year.  Without having them as a point of contact at diagnosis would be terrible.  The staff at PWSA have the knowledge and expertise to support families when things get difficult.  If you have five minutes spare then please have a look at their website or join their Facebook page to increase your understanding of PWS.  

Managing PW isn't easy and some days it can be very challenging. Christmas is a perfect example and a poignant time to be writing this as food has literally surrounded us for the whole month of December. Adverts on TV remind Max and trigger a question about food and the next meal time. Christmas and birthday parties being surrounded by other children who can eat without restriction. We often decline invites to parties as we know that for Max it is easier for him not to be put into a difficult situation.  Often to the detriment of his sister at times who also misses out.

Then there are the physical difficulties Max has to cope with.  He is unable to do activities like football which he loves with other boys due to him being susceptible to injury and not being able to keep up with play and often being left out. Although not deliberate it's a shame for him and heartbreaking.  A simple bike ride that many families take for granted just isn't an option for us. 

It's not just about the food or the physical difficulties. The anxiety levels and repetitive questioning are insane. We do have to laugh about it or we would go insane.  Any family trip or adventure or activity that we plan is overridden by questions to the point of exhaustion by us all. By the time the said activity happens Max has been so wound up that he doesn't actually enjoy himself which is so sad.

One of Max's highlights of his entire year is the family weekends to Sandy Balls Holiday Park which is organised by the friendly, caring and kind staff at PWSA. It's an opportunity for Max and his PWS friends from all around the country to meet up.  The other parents just get it. For us as parents it's lovely to be with other parents where you don't have to explain why Max sounds funny, needs help communicating, needs help getting changed and so on.  The parents also have a good time at the bar and disco!  Without PWSA these family meet ups would not happen.

This year has been a massive year for us and Max especially.  We decided it was the right time for him to leave mainstream school a year early and move him to a Specialist School. We are so proud of him. He said goodbye to his classmates and amazing TA who had worked with him since he was 5.   He has adapted so well and we can't imagine how it must have felt for Max getting on the bus at 7.30am for the first time.  I was a wreck.  This has been the main reason for me to get going on the fundraising. I want him to know how proud of him we really are.  He has his battles all day everyday so surely I can cope for one day of running?

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