A five-year-old boy is fighting against a rare condition that causes his face and body to swell up like a balloon.
Mckenzie Watson, five, has a rare condition which causes his kidneys to ‘leak’ protein which leads to a build up of water in the body.
It also makes sufferers more prone to infection, anaemia and thrombosis.
The youngster has now begun chemotherapy in an attempt to treat the chronic kidney disorder – called nephrotic syndrome – which has no known cure.
Complications include kidney failure, which mean that Mckenzie would then need a risky transplant operation.
His family were shocked when he was diagnosed with rare condition nephrotic syndrome
Mckenzie mother, Antonia Watson, from Doncaster, said the family knew something was wrong when his face and body became badly swollen in January.
‘We took him to the doctors because he was so swollen,’ said the 26-year-old, who manages a dog grooming salon.
‘They sent us straight to the children’s hospital as soon as they saw him, but I think they thought it was just a kidney problem, rather than this rare condition.
‘Since then he’s been in and out of hospital for protein transfusions.’
Nephrotic Syndrome can affect people of any age, but it’s usually first diagnosed in children aged between two and five years old. Around 1 in every 50,000 youngsters are diagnosed with it every year.
The condition has left the normally happy-go-lucky child subject to mood swings.
‘When he swells up he feels a bit groggy and he’s definitely not himself. When he’s really swollen his skin gets very tight,’ said Ms Watson.
Around 1 in every 50,000 youngsters are diagnosed with the liver complaint every year
‘He gets abdominal pain too which can be quite serious because he’s more susceptible to infections.
‘He had a lot of time off school and we were really worried that he would have to be held back. But luckily he’s a clever kid so that hasn’t happened.’
Mckenzie’s water intake is strictly rationed to 800ml of fluids per day – less than a pint-and-a-half – and he’s allowed very little salt in his diet. The boy has also been taking steroids to suppress the illness.
‘He’s become steroid dependent, and the steroids are really affecting him with mood swings,’ his mother explained.
‘It makes him quite angry at times. One minute he’s laughing and the next he’s really upset and punching the sofa or banging on the floors.
The youngster is taking steroids to suppress the illness which is causing him mood swings
‘He’s never aggressive towards people though, and he’s always been a healthy, happy boy.
‘But he’s heartbroken to have this condition because he’s having to go into hospital so much and he’s no longer allowed his favourite foods like chicken nuggets and McDonald’s.
‘Mckenzie started swimming classes just before he was diagnosed, but we’ve had to stop him going to those now because we read that it can cause relapses.
‘He actually didn’t really enjoy swimming so he doesn’t mind, but it’s an important life skill that he’s missing out on really.’
The condition affects more boys than girls, and it tends to be more common in families with a history of allergies or those of an Asian background, although it’s unclear why.
Mckenzie’s father Andrew is preparing to do a charity skydive to fund research into the condition, which affects around 10,000 people in the UK each year.
Andrew is aiming to raise £2,000 to help find a cure for the condition. You can donate here.
WHAT IS NEPRHROTIC SYNDROME?
The kidneys of people with nephrotic syndrome do not work properly, causing large amounts of protein to leak into their urine.
It can affect people of any age, but it is often first detected in children aged between two and five years old.
The loss of protein can cause a range of problems, including swelling of body tissues and increase a person’s chance of catching infections.
Symptoms can be controlled by medication.
A small number of children have congenital nephrotic syndrome, which means it is inherited, and shows up at a much younger age, normally between gestation and three months of age.
These children tend not to do as well, and normally need a transplant, as in Wryn’s case.
Congenital nephrotic syndrome is caused by an inherited faulty gene. For the condition to be passed on, both parents must have a healthy copy of the gene and a faulty one. They then have a one in four chance that any children will develop the condition.
Nephrotic syndrome can affect people of any age, but it is commonly seen in young children. It affects more boys than girls.
Only about one in every 50,000 children are diagnosed with the condition each year.
Source: NHS Choices