A SOUTH Tyneside mum whose son is battling a one-in-50,000 illness is determined to raise awareness of the ‘invisible’ condition.
Little Robbie Naughton, aged three, suffers from Nephrotic Syndrome, which occurs when the kidneys leak large amount of protein, causing problems such as swelling of body tissues and a higher vulnerability to infection.
Robbie was diagnosed at just 20 months, when mum Danielle Johnsen took her son to the accident and emergency department at South Tyneside District Hospital, when he swelled up ‘like a Michelin man’.
Nephrotic Syndrome affects people of all ages – though it is most common in children between two and five.
Miss Johnsen, 32, a mum-of-four, from Inverness Road in Jarrow, said: “I took him to the doctor’s and they just thought it was a cold, but he had swelled up like a Michelin man.
“His nappy wasn’t even fitting – I knew something was wrong.
“It is like an invisible condition.
“To look at him, you wouldn’t know there was anything wrong with Robbie, but it causes swelling and infections.
“It is very dependent on steroids to keep it under control.”
Robbie must take steroid medication every other day, which can causes mood swings, and Miss Johnsen has to check her son’s protein levels every day.
Robbie has been cared for by staff at Newcastle Royal Victoria Infirmary and is currently in remission.
Most children will relapse less frequently as they get older, eventually growing out of the syndrome by their late teens.
Miss Johnson added: “The Newcastle RVI have been excellent and Robbie’s dad, Tony Naughton, has been by my side all throughout this.”
But sufferers can relapse many times, with Miss Johnsen saying even a bout of sniffles can cause the condition to flare up again.
Miss Johnsen is determined to boost awareness of the syndrome and bring in cash for the Nephrotic Syndrome Trust, a national charity supporting sufferers, with a fundraising night next month.
The girls’ night, held at the Simonside Arms on Saturday, September 21, from 7pm until midnight, will include a raffle, bingo, disco and karaoke, with revellers invited to come along in fancy dress if they wish.
Miss Johnsen added: “I want to help the charity because they have been a great support for me.
“I was able to go on their website and speak to other parents who understand what you are going through, which has been a big help.
“I wanted to do something to thank them and raise money for them.
“Even if just 10 people turn up and we just make £100, that will still help.”
Tickets for the charity night are available for £3 either on the door on the night, or in advance by e-mailing Danielle on email@example.com
Anyone who would like to donate raffle prizes for the night can also e-mail Miss Johnsen.