On the 10th October 2016 my son Hugh Michael Greenwood was born a skinny bag of bones at exactly 6lb. Scans showed Hugh had stopped growing and after a horrific induced 10 hour labour Hugh's stats were dropping to dangerously low levels so we were rushed into theatre where he was delivered by emergency caesarean section

Hugh couldn't breathe due to a hole in his lung, so after resuscitation he was whisked away to NICU in a incubator without his mum having a chance to see him, let alone hold him or feed him.

Being the fighter he is, the incubator and oxygen were soon gone but Hugh was still very weak, floppy and unable to feed. A nasogastric (NG) tube was passed so the nurses could feed him directly into his stomach using a syringe. The doctors hoped this floppiness would pass as he became stronger but as the days passed we saw little improvement and test after test came back without an answer.

After 2 weeks Hugh started to open his eyes and react to his mothers voice (he is such a mummy's boy) but was still extremely weak, so continued to be NG tube fed as he couldn't suck a bottle, we didn't even know if he had a swallow reflex if he could.

Now his mum is an amazing but stubborn lady and given the chance wouldn't have left his side for a second. She spent every day in hospital with him, reading him books, exercising his muscles and stimulating his suck reflex. Then we had the first breakthrough, Hugh started to suck on a dummy! Never had something so 'small' and 'insignificant' felt so big so amazing so happy.

However the days and weeks went on and so did the tests but still we had no diagnosis. After 23 days in NICU finally Hugh was sent home. He was still learning to suck so still fed by NG tube, it was just amazing to finally have him home.

Then when Hugh was 5 weeks old to the day we got the call. The day our world was turned upside down. The phone rang, it's was Hugh's consultant, we finally have a diagnosis he said. We had the option to book an appointment and go in and discuss with him but we asked for the news there and then. Prader-Willi Syndrome he said, what on earth is that we thought? Well let me tell you... 

Hugh by random chance has two of his Mum's chromosome 15 (we can now joke that Hugh is 52% mum and 48% dad - I still mean to get a t-shirt made for him saying that)

Prader-Willi Syndrome (or PWS) is a complex genetic syndrome which is 60 times more rare than Downs Syndrome. It is thought to affect less than 1 in 15,000 births, wow 1 in 15,000!

Now Prader-Willi Syndrome can cause some of the following:
Hypotonia (decreased muscle tone)
Hypogonadism (lack of hormones)
Short stature
Delay in and difficulties with emotional and social development
Developmental delay and learning disabilities 
Challenging behaviour
Autistic Spectrum Disorder

If that wasn't enough Hugh will suffer from Hyperphagia (excessive hunger and inability to feel full). This is the part of PWS which we fear the most. Hugh is likely to start food seeking between 3-5 years old and as a result will probably never be able to live a truly independent life. Just stop for a second and imagine always feeling hungry and it never ever going away, I'm not sure I can even start to imagine what that would be like. Then say due to your reduced physical ability and the way your matabilisum works you need less calories than the average person, so you are on a strict calorie reduced diet with no carbs, no sweets, no crisps, no chocolate, no cake, even limited fruit due to sugar content... well this is Hugh's life and life isn't fair!

So to the better news... Hugh now nearly 10 months old as I type this. He is still weak and floppy compared to other babies of his age but is getting stronger every day, amazing us everyday. Hugh ditched his NG tube on New Years Eve 2016 and takes his milk from a bottle and he can now support his own head. Hugh needs physiotherapy everyday to help strengthen his legs, arms, neck and torso. Hugh has started to reach, grab and kick, he had now learnt to roll and sit (with a wobble and the often tumble) and I have no doubt he will one day crawl and walk as he is a stubborn little man, just like his dad. We know learning and talking will be delayed so we have learnt basic sign language and have already started to sign to him.

Not a day goes by that Hugh doesn't make me smile or laugh, he has such a cheeky personally and the cutest little laugh, he is a fighter and I am so proud of what he has achieved, of who he is and what he will become.

PWS is not curable, it never will be. You can not simply correct someone's genes. But PWS has become more manageable, in part is due to the amazing work of the FPWR (Foundation for Prader-Willi Research). If we can just find a suppressant for the excessive hunger think of the difference it would make to people like Hugh. Now i'm a lucky man, I have a wonderfully supportive family and an amazing fiance who without I do not know how I would have survived the dark weeks and months following Hugh's diagnosis. I also have a bunch of close friends and it is with these 7 ageing, unfit blokes I will be walking the Yorkshire Three Peaks on the 2nd September 2017 to raise awareness of PWS and also money for the FPWR so they can continue their invaluable research in to managing this rare syndrome and supporting the families and their loved ones.

The Yorkshire Three Peaks Challenge takes on the peaks of Pen-y-ghent, Whernside and Ingleborough, usually in this order, and in under 12 hours. These peaks form part of the Pennine range, and encircle the head of the valley of the River Ribble, in the Yorkshire Dales National Park. The Yorkshire Three Peaks route is 24-miles long, and includes 5,200ft (1,585m) of ascent!

One week later on September 9th I will also be walking Mount Snowdon with my wonderful friends and colleagues from McBride. I'm humbled by the support and can't thank you all enough!

So please take a few minutes to read about PWS as awareness is just as important as your donations (www.fpwr.org/gb and  www.pwsa.co.uk), but please do sponsor us as well. Every penny counts and every penny will go to supporting research in to managing the long list of conditions faced by people with PWS like my boy, my amazing Hugh.

Thank you from the bottom of my heart

#3HillsForHugh #PeaksForPWS #StillHungryForACure #PWS

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