Daily Mirror (Northern Ireland)
Moving diary reveals son’s battle for life
the case,” she says. “Patients can be very ill for a while after their transplant, and you must get used to the different types of medication. It may be a struggle to cope with that.”
Max has “Bad Boy Bose” on his medical stand by his bed because of his love of music, and the speakers of that name, along with “DJ Johnson”.
He lets me listen, through a stethoscope, to the booming mechanical pump moving his heart. He has to regularly sip water, as whenever he gets hiccups it plays havoc with the machine.
Max shows me a toy strawberry, plastic and red, and jokes that it’s his new heart. “Whoops, I’ve dropped it,” he laughs, before playing table football, pool and other games with his brother in a ward room.
Freeman heart surgeon Fabrizio De Rita believes the Mirror-backed opt-out system would provide more donor organs for youngsters like Max.
The top medic says: “It is really challenging to ask families about donation at the most difficult time, when they have just lost a loved one.
“Twenty per cent of people die on the waiting list, that is a substantial number.
“The younger you are, the longer you are likely to wait for an organ.”
Paul and Emma believe our campaign gives hope for other families in future.
“Even if it does not help Max, we know it might help others,” says Paul. “That is very important to us.”
More than 10,000 people back our petition calling for the opt-out system to become law so that people are presumed to be donors, instead of opting in by which you have to carry a card.
Thousands more signed the organ donor register after reading our story on Max before the petition was launched.
See www.organdonation.nhs.uk, or sign our petition at mirror.co.uk/donor. Scott House in Newcastle relies on donors, www.sickchildrenstrust.org.
Every time the phone rings, I think it might be a heart.
Saw the film Passengers. The message is to make the best of negative situations, which is what we are all trying to do.
The cardiologists have decided that the left side of Max’s heart was too precarious to risk leaving him. A left ventricular assist device is fitted in a 7.5-hour op.
Max was given four antibiotics due to infection – suffered an anaphylactic shock. The nurses put out an emergency alert. Everyone came running to rescue him.
Max’s liver is enlarged and his shoulder is aching. He is a very frail little boy. It is hitting me hard to see him suffering. Weight loss and Max’s breathing is a concern. Back to intensive care, where he was given adrenalin and oxygen. He looked hollow-eyed. Down to 3st.
Max gaining weight, feeling cheerful. Resting heart rate 155 beats per minute. Very frail but oxygen tube removed. Max still needs that new heart. Just hope it comes while he is so stable and strong.
Most consistent week so far, no emergencies or setbacks. Max’s attitude and humour really helps.
At David Lloyd. Watched everyone go about their normal lives, playing tennis, laughing with their kids, planning holidays. I wonder whether our lives will ever be normal again. Feeling drained and exhausted.
Max hit by a nasty virus. Starting to get a bit of cabin fever, desperate for fresh air and a walk but trapped inside the ward.
His high-spirited demeanour can be deceptive. Phrases like “end stage heart failure” and “awaiting urgent transplant” on his medical notes hit you in the soul, reminding you of the cruelty of it all.
It’s never far from our mind that Max will ultimately benefit from another family’s tragedy and loss.
He is stable again, if a little fragile. Father’s Day lunch. The empty chair always makes me feel sad.
Max is gaining weight.
The Mirror campaign channels our energy into positive activity that could help Max (and others). Another child is given a heart transplant. Poor Max, why is it always him who is left waiting?