Timmie-Joe's chocolate timebomb
Like most young children, Timmie-Joe Watkinson enjoys days out with his family.
The two-year-old enjoys nothing more than a trip to the park, going to play centres or visiting friends.
But for Timmie-Joe, from Burston, life is very different.
Brave Timmie-Joe suffers from a rare condition which means he is highly allergic to protein.
A meal at McDonalds, an ice cream in the park, even just one chocolate bar, could lead to permanent brain damage.
“If Timmie-Joe were to eat like any other children, within six weeks his health would begin to suffer,” said his mum, Sammy, 39.
“His condition means that things like Haribos and fizzy drinks are also out, too.
“I have to strictly control and monitor everything he eats and be constantly on alert. He is starting to understand what he can and can’t have, but as a typical little boy, he still wants what other children have.
“He just can’t.”
Timmie-Jo has a condition called Phenylketonuria (PKU). He was diagnosed when he was eight days old, following a simple routine blood test for newborns.
PKU is a rare genetic condition that affects only one in every 10,000 children. He has the most severe form - and his mum wants to raise awareness..
It means Timmie-Jo’s body can’t properly break down the amino acid, phenylalanine, which occurs after digesting protein.
This then builds up in the blood, and brain, and can lead to brain damage, within months.
It also means most of Timmie-Joe’s food has to be prescribed, along with a special supplementary diet, which costs £10,000 a year.
“Timmie-Joe has a red, amber and green list of foods he can and can’t eat. He is allowed only 5 grams of protein a day,” said Sammy, who is trying to raise awareness of the condition.
“Red is things like meat, fish, eggs, cheese pastry, chocolate or cakes, as there is protein in milk. It means he basically can’t eat all the things children love.
“Amber is things like baked beans, potatoes, caulifower and chestnuts, of which he is allowed only a tiny amount each day, such as eight baked beans or two teaspoons of peas, as the shells have protein.
“He can eat protein-free food, such as fruit and vegetables. The rest of his diet is made up of protein-free prescription food, and special vitamin supplement drinks throughout the day, which help him grow. ”
Sammy, who has three other children, Amelia-Mai, six, Kellie-Anne, five and Tia Rose, 13, is allowed 15 prescription foods a month on the NHS.
One prescription can be four special yoghurts, two loaves of bread, five fruit bars or two special pizza bases.
“The prescription food I make for him is powder-based so with bake beans, I would make him a special sausage by mixing it with water and rolling it. It doesn’t taste good at all.
“I kept a daily diary at first because it was hard to monitor his tiny protein allowance. But after two years, it has got easier.
“He likes cars, and at the moment. I tell him his tummy is like mummy’s car and needs special petrol.
“If I put the wrong petrol in, it would go glug-glug-glug, down the road.”
Timmie-Joe goes to Gissing Nursery, three times a week, where staff know about his condition.
“The difficult thing is, that it is so rare, nobody knows about it, even health visitors and doctors.
“I make him his lunch and staff at the nursery are brilliant making sure he doesn’t get tempted or given anything else.
“We can’t really take him out for a meal either other than to El Greco in Long Stratton where they make him a special pizza with his prescription pizza base.”
Sammy is a member of The National Society for Phenylketonuria which offers support to parents and adults with PKU.
“The society is hoping for a drug called Kuvan to be made available of the NHS which is said known to ease the condition. But it is expensive.
“In day-today life, there has been slip ups when for instance, one of his sisters has given him chicken nugget, just because she wanted to share.
“It’s like living on a knife edge all the time in case he eats anything he shouldn’t, or someone gives him something, just out of kindness without realising.”
By maintaining a strict diet while he is young, there is every chance that Timmie-Joe can lead a normal healthy life. Young children are more susceptible to suffering permanent brain damage than adults, as their brains are still developing.
PKU also means Timmie-Joe cant drink fizzy drinks, which contain aspartame, or sweets, such as Haribos, which contain gelatin, both of which prove toxic.
“The other day we were at Subway with Timmie-Joe’s sister and dad and though they were eating ham rolls, Timmie-Joe only chose salad.
“He is learning though and one day will understand exactly why he can’t eat food like other children. But it’s hard for him.
“I have watched YouTube videos where a person’s diet hasn’t been monitored properly when they were young, and affect is heartbreaking.”
To find out more about PKU, visit: www.nspku.org