Thanks for taking the time to visit my JustGiving page. Let me give you a little insight into our life.

Joshua was 2 weeks old when he was diagnosed with a condition called Prader-Willi Syndrome (PWS). PWS causes a wide range of physical symptoms, learning difficulties and behavioural problems.

When Joshua was born his muscle tone was so poor that he was unable to breathe adequately enough, he couldn't suck a teat on a bottle, infact he didn't move very much at all. He needed 24/7 oxygen therapy, he had an NG tube so we could provide nutrition and we needed to change the position he lay in every couple of hours.

Fast forward and Joshua is now 2 years old but over the last 2 years we have been through a lot. There have a lot of ups & downs, hospital visits and clinics but he surprises us every single day. The picture we were painted at 2 weeks old was so bleak and colourless but our lives are so vibrant, because of Joshua. He brightens up every single day, however, those days do not come without their challenges.

One of the treatment options for PWS is Growth Hormone injections, which Joshua recieves every night. I truly believe that these have benefited Joshua immensely. Joshua's muscle tone has improved massively and he is one of the strongest little people I know, physically and mentally. He can now play with his toys like a typical 2 year old, something that didn't come naturally to him. He only needs oxygen now overnight when he is asleep. He can eat a typical toddler diet. And he WILL follow you everywhere as he has become a master bum-shuffler. All these things seemed so far out of reach back in December 2020.

However, as Joshua gets older he will need to overcome many more difficulties. Joshua will have an inability to feel full. It is likely that he will develop an increased appetite and eat an excessive amount of food if given the chance. This can be extremely dangerous as another symptom of his PWS is that he also has a much higher pain threshold. This can put him at higher risk of food poisoning, choking and stomach rupture. PWS also affects the hypothalamus, this causes problems with Joshua's temperature regulation. This means that in the event that Joshua becomes unwell it is unlikely that he will develop a fever. It's hard to predict at this moment in time but it is also likely that Joshua will have some form of learning disability.

Thanks to organisations like Foundation for Prader Willi Research UK, there have been major advances in the treatment of PWS, compared with in the past. FPWR solely focuses on funding for research, research that has helped approve things like Growth Hormone in the treatment of PWS. Everything they do helps to raise awareness of this rare condition and their research can help people like Joshua live full and happy lives. 

I hope you will all join me in supporting this charity that is very close to my heart. This charity gives me hope for Joshua's future, and with your help maybe we can find a miracle that will give Joshua the best life possible.

Thank you all so much 🤍