But Jacob was a fighter and lived well beyond that week. Although Jacob was restricted physically with what he could do, he lived a relatively normal life.
At 11 years old Jacob started to deteriorate, finding it difficult to do normal daily activities. When he was 12 Jacob had open heart surgery to reroute the blood through his heart so that he would have more oxygen rich blood. The decision was made to only partially close the hole in his heart. Surgeons believed that closing it further would cause more complications.
Within weeks of the operation Jacob was full of energy, riding his bike and running around the neighbourhood. Jacob was able to enjoy a few years of good health, behaving like a typical teenager in many ways – fishing, camping, rock climbing.
"He was not typical in the fact that he, his girlfriend and I spent a lot of time together, unlike most teenagers who spend their time trying to avoid their parents," explains Nicola.
When he was 16 Jacob's heart began to race at 180 beats per minute. Over the next three years Jacob had to take daily medications with unpleasant side effects. He endured regular visits to hospital, often by ambulance, for medical procedures, interventions to control his heart rate, operations and on-going tests – a typical life for a lot of heart children.
"Despite this Jake was always positive and brave even with his numerous visits to hospital. He had a real depth of character. Despite his heart condition he wanted to be part of the team in his work environment and not hide behind it," said Nicola.
Just before Christmas 2008, the Pointons received "the call" for Jacob to go back for the fourth attempt at a cardiac ablation where the tissue causing his heart to race is destroyed, returning the heart to a normal rhythm. "We were looking forward to him being a new man for the New Year, hoping this time it would be a success," said Nicola.
"I returned to the hospital expecting to see my brave boy sitting up in bed, instead I was called into the doctor's office and informed that my precious son had suffered a massive stroke."
Within hours Jacob was surrounded by sixteen family members and friends who tended to him over the following days.
"On the second day after the stroke Jacob's brain started to swell, a complication that can occur in young stroke victims, and the doctors gave him a 50/50 chance of survival," explains Nicola. "We were told if he did survive, he would be seriously disabled and unable to walk, talk, go to the toilet or feed himself meaning he would need to be nursed for the rest of his life. We were asked to decide if we wanted Jacob to have further surgery where surgeons would remove part of his skull giving his brain room to swell in the hope that it would reduce further damage."
"This decision was by far the hardest I have ever had to make in my life. Fortunately I had 12 others who loved Jake as much as I did to help me decide. Knowing Jake already struggled with his heart condition, we knew he would not want to live in a disabled state. I would have loved so much to keep him alive in that state, any state; I would have nursed him for the rest of his life. But we weren't making the decision for us; we were making it for him."
Jacob died surrounded by his family, friends and girlfriend of five years.
Ironically, even though he had suffered a serious heart condition his whole life, Jacob was able to donate his heart valves.
"For something that seems so relatively small, it is amazing to think he has saved the lives of three children – a teenage boy and two babies, children with similar conditions to himself.
"Jacob loved to help people when he was alive. For me it helps with the grief process to know that Jacob's life continues to have meaning. Although I don't have my boy any longer, he can make a difference to other people's lives," said Nicola.
