Hey! Thanks for taking the time to visit my JustGiving page!

My Sister Emma and I have ran the London Marathon !

(still recovering)

Prader Willi Syndrome......

When Maximus Simon (Now 9!) came into the world he didnt open his eyes or cry, he was as floppy as a rag doll and wasn't able to breast feed. To our shock he was taken into special care. Whilst being tube fed in a motionless state and after many intrusive tests we were finally sat down and told Max had a rare genetic disorder called Prader Willi Syndrome (PWS). 

We were also told ......

Max wont have children and will need lots of support and constant supervision for the rest of his life travelling along a different road now than a normal child would. Max has a damaged area in the brain called the Hypothalamus that means he will never feel full up! Max would also suffer with very low muscle tone (inside & out) and have a slow metabolism making burning off his calories very hard. Without a strict daily monitoring of his calorie intake Max could very quickly become overweight and this could quickly lead to life threatening obesity. It was a lot to take on board.

Max would have learning difficulties which include having a short concentration span making learning a challenge. He would have short term memory, poor fine motor skills and speech and language difficulties. In the future it is doubtful that Max will be able to drive or go to University or even be able to sustain a relationship. Going to parties and going out alone with friends will always be very difficult situations for him to handle. Sadly, food will be a link to all the above and Max can not be left alone to deal with food by himself. It could be fatal, it is that serious. Our eyes have to be on Max day and night and he may do anything he can to obtain food in the future : (

Food has become the enemy in our world and it is always on his mind and in discussion. From the moment Max wakes until he sleeps it is in his day plastered on the tv, the radio, in discussion everywhere and constantly offered everywhere! Our nation is in love with food. We have a daily battle with this and when we are around food with Max we can't relax . Its hard to digest (Food talk is in our language also)! At home we won't discuss it and preparing food is tricky, making it fun but low calorie. Max not having food leads to a bad temper and tears! We can all relate to feeling starved and cranky. Max feels like this all the time sometimes referring to the monster in his stomach : (

The awareness of the above issues by others in Max's life really helps Max out big time. Understanding that Max will not stop eating if left alone, will never leave anything, will feel hungry after a good meal by just hearing/seeing food, will obtain food in any way and remembering that he is on a strict daily calorie controlled diet, really helps us support Max. With awareness and understanding of the syndrome Max can live a healthy long life. Max looks normal to the eye and does not look overweight . It's a daily battle of robbing Peter to play Paul.

Having said all that doom and gloom  Max is a unique, amazing, funny and kind natured boy who brings so many smiles to everyone he meets. He is determined and developing every day proving us wrong in so many ways (It seems he is already doing better than his dad did at school)! It is unlikely that he will follow in the same path as his friends at school but he doesn't understand that yet. But that is ok. Our aim is for Max to be very happy and be the best that he possibly can be handling life.   Our dream would be for there to be a cure for the feelings of hunger that he constantly feels because this controls his world. He deserves that opportunity. Scientists are working on this now and It's possible!

So please sponsor us for our 26.2 mile Marathon so that the money can go towards keeping the Association running, which offers invaluable help and support to our extended Prader Willi family. It costs £350,000 per annum to keep PWSA running.  Any money raised can also go towards research into finding a cure for our loved ones. Max already benefits from research in the form of a daily Growth Hormone injection. It's changed his world. His life is a big challenge with many frustrations every day but he is always smiling and laughing and has a mountain of support that we can never be thankful enough for. 

From Emma..

Max means the world to me - as does his little sister. I’m so proud of my Godson/nephew/friend/dude/cousin/son/grandson (I could go on). He’s my little fighter. He makes me laugh so much and he never fails to me make me smile. From the outset his life may seem normal or easy to some people, but I know that’s not the case. That’s why I’m putting my heart soul and left knee cap into this run. The PWSA is an amazing Charity in so many ways. It needs crucial funding to help raise its profile and scientific research. I know there’s a lot of info to digest here but thanks for reading. The more you understand Prada Willi - the more you understand how difficult things can be for Max and his quite remarkable family. Some people don’t believe in heroes - that’s because they haven’t met Max…..

                                                   THANK YOU!

And while we are thanking - Big thanks to the Truslove & Burke crew for the recent massive charity night and everyone who contributed in to it. And a shout to Phil & Louise Murley for their big support via the DV&CF. 

We appreciate you taking the time to read about our life with Max and our thoughts are also with all children and adults with a syndrome or illness.