WATCHING him play with his big brothers, you would never know that Jude Allen was even a little bit unwell.
But look closer and you will notice the bright and happy four-year-old has a rucksack permanently strapped to his back.
Inside is the equipment that keeps him alive – a huge bag of fluid with a pump that sends vital nutrients straight to his heart through a feeding tube.
Jude, from Claremont Gardens, Waterlooville, was born at 28 weeks and has a serious gastro-intestinal condition that’s so rare it does not even have a name. He has complete intestinal failure.
The youngster, who is soon to join Moorlands Primary School, is one of only five children in the country who needs a multiple organ transplant – called a multi-visceral transplant.
He is about to join the transplant list in the hope of finding a new stomach, pancreas, small bowel and large bowel.
His parents Kellie, 36, and dad Darby, 42, are backing the campaign for people to join the Organ Donor Register and to make their families aware of their wishes.
Kellie, who is also mum to Morgan,14, Casey, 12 and Oscar, six, said: ‘A transplant won’t make the problem go away but it will give Jude the chance of a better quality of life for a period of time.
‘Potentially this could give Jude the chance to be a normal little boy. He could go out and play football with his brothers.
‘Although the transplant is for medical reasons he wants it just to be normal.
‘He wants to be able to do flips on the trampoline without damaging his feeding line and risking a life-threatening infection.
‘I would like to say to everyone – just sign the register. I know it’s hard to think about but there is a massive shortage of child donors in the UK.
‘That’s because it’s very difficult for us to make that difficult choice of having to give our loved-ones’ organs away when they die.
‘But making that decision when you’ve lost a child could mean giving the gift of life to nine other children.’
Jude’s backpack contains nearly three litres of total parenteral nutrition (TPN) – the vital nutrients, sodium, potassium and fluids that keep him alive, along with a pump and a second bag which drains the stomach.
It weighs 9lbs – one third of his body weight. But the youngster never complains. He and his family are all positive, full of fun and deal with the setbacks with hope and courage.
His young life has been punctuated by frequent hospital visits.
It is a daily battle against life-threatening infection.
At the beginning of the year Jude was in hospital for four months.
Any sign of a raised temperature means he must be admitted immediately.
His family are desperate for him to have the chance to change that with the transplants.
Kellie said: ‘Jude is amazing.
‘He’s tiny but incredibly strong. He gets tired very easily but handles it brilliantly. He just sits down quietly or asks me to pick him up.
‘The only time he gets upset is at birthday parties. He bursts into tears when the cake comes out because he can’t sit down with the rest of them and eat.
‘He has a huge desire to eat food but he can’t because his digestive tract can’t take it. He will get a bowel obstruction and internal bleeding. He has never eaten food.’
Jude must have a series of vaccinations to protect him for when he gets his new organs because he will be given medication that will suppress his immune system.
He begins school in September and the challenge now is to find a nurse to accompany him because if his feeding line comes out for a moment his life is at risk.
To register go to organdonation.nhs.uk or call 0300 123 23 23.
Making your family aware of wishes is vital
TRISH Collins is the team manager of the South Centre Organ Donation Team.
She said: ‘The key thing is people need to make their families aware of their wishes if something were to happen to them – whether or not they would like to become organ donors.
‘Thirty per cent of the population are on the register but there are more than 8,000 people waiting for a transplant.
‘Sadly, on average, three people die each day while they are waiting.’
Registering to become an organ donor is easy.
It can be done online and you no longer have to carry a card with you – but you can request one.
Trish and her colleagues are on call 24 hours a day, 365 days a year.
Once doctors have confirmed there is nothing more they can do for a patient who has suffered serious injuries or a medical emergency the donation team is contacted to assess whether the person’s organs can be donated.
If they can, they check whether they are registered and the family is approached.
Trish said: ‘We are very much guided by how the family are, how they are dealing with this tragic and devastating situation.
‘It is usually something that happens quite quickly, not somebody who has been sick for months.
‘We approach the family and explain the
‘This is why it’s so important to have that conversation with your family about your wishes.’
Some people feel their religious beliefs would stop them from donating but, Trish says, all the major UK religions support organ donations because they saves lives.
She and her team offer support to the families of organ donors and reassure them that their loved ones will be treated with respect and dignity.
Register at organdonation.nhs.uk.
Alternatively call the organs register donation line on 0300 123 23 23.