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Our son Alfie lost his battle for life on the 30th June 2012, to mark this event I will be taking part in THE WALL (in 24 hours)

The concept is simple: You will run (or walk) from Carlisle Castle to the Gateshead Millennium Bridge over a mixed-terrain route that incorporates both on and off-road sections. You could call this City to City, Coast To Coast or Castle to Castle. That’s up to you. We call it The Wall. 69 miles* from start to finish. 69 miles in 2 days, or for those that want to rule with endurance - in one continuous journey. In 2012 this event enabled 800 participants to cover a route that mixed the qualities of great cities and stunning countryside all into the one event.

http://www.thewallrun.com/ for further details

Our son Alfie suffered from a rare and incurable condition called Pulmonary Hypertension, he was diagnosed at three months old. He was born with a heart defect called Transposition of the Great Arteries (TGA). Alfie had open heart surgery at two weeks old to correct this defect, this should have been the end of it and Alfie should have gone on to have a normal life. However for reasons unknown to the specialist at Great Ormond Street (GOS) Alfie developed a unique and aggressive form of Pulmonary Hypertension.

Alfie was very poorly through his life, on  more than one occasion we were told that he would be lucky to survive the night, he spent weeks at time on intensive care.

On one occasion he choked on a piece of apple and the neighbour had to perform CPR on him, he was subsequently diagnosed with a airway abnormality caused by the Pulmonary Hypertension.

As the condition worsened Alfie was started on the strongest treatment, this meant having a tube inserted into his heart, through it an IV drug was delivered 24 hours a day, he was attached to a pump about the size of a Gameboy for over half his life.

He also had a PEG fitted when he was two and a half, this was a tube which delivered medication and nutritional supplements directly into his stomach. He eventually stopped eating all together and became solely dependant on this for all his nutritional needs.

He was also listed for a heart-lung transplant but we knew whe this was offered the chances were slim at best.

In the end Alfie had just had enough, and was in control till the very end, He managed to get us all to Martin House and when he knew we were being looked after slipped away. He died two weeks before his fourth birthday.