LITTLE Brandon Styles may suffer with a life-threatening metabolic disorder but today he will celebrate his 12th birthday.

Brandon, of Mannington Park, has argininosuccinic aciduria, an inherited disorder that causes ammonia to accumulate in the blood.

And he is given medicine four times a day, every six hours, around the clock.

Until just over a decade ago, sufferers of the condition were not expected to live past their 11th birthday, but as long as the condition is monitored 24/7, sufferers now have a brighter prognosis.

For Mum Nicki, 39, who volunteers at The Pilgrim Centre and works as an usher at the Wyvern, while caring for Brandon and 13-year-old daughter Krystal and son Bradley, 14, it is a milestone she wanted to share with the world, especially as Saturday would have been the 16th birthday of her first child Brett, who died from the same condition at just six days old.

“They only found out Brett had the condition through a post mortem and I didn’t know anything about it,” she said.

“We never made it out of hospital and in some ways I think that was a blessing – at least I wasn’t on my own.

“When Brandon was diagnosed when he was just eight hours old, I was really worried because of what happened to Brett, but in a way I felt that it was time something went right for us.

“ I had had my fair share of bad luck, although I know science doesn’t work like that.”

Following the diagnosis, Brandon was taken straight to Great Ormond Street Hospital where the family remained for the next fortnight.

The condition means that Brandon has an enzyme missing so his liver cannot excrete toxins. If not monitored carefully, it could poison all his organs, which is what happened to Brett.

Brandon is on a restricted protein diet, has complex health care needs, global developmental delay, growth hormone deficiency and is allergic to dairy products.

“I don’t think Brandon really understands the condition, mentally he is only about five years old so we can only really discuss things with him that are relevant for that age group,” said Nicki.

“He knows he isn’t your average 12-year-old and he can get frustrated with that.

“His brother and sister are good with him. It can be hard because Brandon needs and wants attention 24 hours a day.

“I keep as busy as I can because it is when things slow down that everything can get a bit maudlin and I can get upset about Brett.

“In a way, I can’t believe it has been 16 years – we always have a cake to mark what would have been his birthday.”

In December, Nicki will complete her sixth charity trek in Thailand to raise money for Naomi House Hospice, where Brandon is looked after for 16 days a year.

To sponsor her, visit www.

justgiving.com/nicki-styles.