For four months grandad Tony Marcangelo has looked on helplessly as his ‘Little Angel’ fights for life in hospital.
One-year-old Carina’s Marcangelo's damaged heart has given out several times and her only hope is a transplant.
But Mr Marcangelo knows that time is running out, because of the scarcity of donor organs.
So the 63-year-old from Worcester is doing the only thing he can – appealing to people to sign up as organ donors and to campaign for an opt-out system that would give children like Carina a better chance of survival.
She was diagnosed with cardiomyopathy, a disease which damages heart muscle, in July and has spent half her life in London’s Great Ormond Street and Royal Brompton hospitals.
Her condition causes abnormal heart rhythms which, if not treated and managed, can result in heart failure.
Her heart has already stopped beating several times. In November, Carina became the youngest child in the UK to be fitted with an implantable cardioverter-defibrillator (ICD) device, which gives her heart a shock if it goes into an abnormal rhythm.
The device is the same used to keep footballer Fabrice Muamba alive after he suffered a cardiac arrest on the pitch at White Hart Lane last year.
It would normally last someone for seven years, but Carina’s ICD has almost used up its entire battery charge in the few months since it was fitted.
Tony has been making the long trip from his home in Fernhill Heath to London at least once a week to be at Carina’s bedside.
But he knows that time is running out for Carina the longer the wait to find her a new heart.
He said seeing her in this condition and witnessing the agonising wait had opened his eyes to shortcomings in the transplant system.
He wants more people to sign up as organ donors and join him in signing a petition calling for the government to create an “opt-out” organ donor system - where people are automatically on the register unless they specifically ask to be withdrawn.
“Carina means the world to us. It is very difficult at the moment and you just have to keep holding out hope that someone comes through,” he said.
“It has opened our eyes to certain things. You don’t realise until you find yourselves in that position but we want to get more people on the donor list and get the system changed.”
Mr Marcangelo is urging Worcester people to join the organ donor register by calling 0300 123 23 23 and to sign a petition calling for an opt-out system at epetitions.direct.gov.uk/petitions/38220.
Transplant facts and figures (from the NHS Blood and Transplant Service)
- 96 per cent of the UK population believe that donating organs is the right thing to do, but only 30 per cent of people are actually on the organ donor register.
- The total number of people on the Organ Donor Register is 19,320,264
- There are currently 7,410 people on the national waiting list for an organ transplant; 139 of them are children.
- There are currently 193 people waiting for heart transplants in the UK, including 17 children.
- Waiting times vary hugely but heart patients wait on average 253 days for a transplant.
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