Thomas loved to be on his own in his room playing his playstation and only wanting you to go in if he was stuck and needed help with a game. He was such a regular at EB games that he got a discount on all the games he bought.

Sunday 19th April, Thomas was in his room and came out huffing and puffing saying mum, come watch me on the computer, I said hold on, are you ok ..he was short of breath and said yes, I went into his room and sat on his bed and watched him play his computer for about 20 minutes and was concerned how short of breath he was, I felt his heart and it was racing, I took to Cessnock Hospital, he had an ECG, and sat brilliantly for it.

Second week of term three, he started 4 days a week at his satellite Autistic school, Thursdays were excursion days. Thursday 31st July 2008, was at a nature reserve in Newcastle and he had been really good before then, so I sent him to school only to a phone call at 12.30pm that day to say Thomas had lost control of his bodily functions and was a shade of blue, I jumped in the car and drove the 40 minutes to get him and took him to John Hunter Hospital in Newcastle which was only 5 minutes from where they were.

I was told a lot of things that could have caused this, stroke, seizure etc, he was breathing at 70% and admitted to hospital.

He had a week at home before going back to his cardiologist for a check up. He just played his playstation and ate his choppies. I took him to school one day so he could get his school photos's taken. In this week at home I googled PH so much that it made me so scared but had hopes of medication working.

Monday 18th August he had a follow up with his cardiologist, who didn't like the look of him and said he needs to be hospital so we took him straight back to John Hunter Hospital where he was admitted for a further 5 days. They stopped the sildenfil and he had a cannula put in … against his wishes, and was getting lasix by IV, and was started on bosentan and spirolacten orally, which was a major drama, as the sildenfil I could hide in his Sunkist as syringing medications into him was enough to turn him blue.

On Monday 1st September 2008, I sat him up to fix up his prongs on his face and he was puffing so I took straight to Cessnock Hospital where his feet were quite blue and upped his oxygen to 4 litres and got him stable then we were transported by ambulance to John Hunter Hospital.

We were moved to a private room. Friday 5th September he had his Operation to have a Percutaneous Endoscopic Gastrostomy (PEG) put in, so he could get his full medications and feed him as they were very aware of what Thomas was like with taking his meds and his poor diet, and came through this beautifully.