Family mark 'huge milestone' as boy with rare condition starts primary school

Four year old Alexander Pickering, known as Xander, who has had five major operations since he was born with a rare and life-threatening condition

An "amazing" four-year-old boy who has had five major operations since he was born with a rare and life-threatening condition is starting his first day at primary school.

Alexander Pickering, known as Xander, was just an hour old when a nurse at Colchester Hospital noticed there was no opening in his bottom, meaning he could not pass waste.

The condition, called an imperforated anus, is life-threatening if left untreated, putting the infant at risk of infection and possible perforation of the bowel.

Xander was taken to the Royal London Children's Hospital at one day old for an operation to create a colostomy and he has been back for four further surgeries.

He used a colostomy bag for 15 months before a second operation created an opening in his bottom.

His most recent surgery, in June, created an ACE stoma which means he does not need a colostomy bag any more and can pass waste at home daily.

Xander lives in Little Clacton in Essex, with his photographer father Mark Pickering, 37, his mother Kiera Pickering, 32, who works as a doctor's surgery receptionist, and his brothers Jacob, eight, and Theo, seven.

Mrs Pickering said Xander was eager to join his two brothers at Engaines Primary School on Monday.

"Xander is really looking forward to starting school because he wants to be a 'big boy' like his brothers," she said.

"For months, he's been telling us that he is getting taller and asking whether he is big enough to go to school yet.

"Starting school is a huge milestone for us."

Mr Pickering said Xander's condition was "life-changing" but they had got used to life with it.

"He knows everything he goes through," he said. "We don't hide anything from him.

"We're not looking for sympathy - it's just to make people aware."

He added: "In himself he's amazing, he's magical.

"He does everything everyone else can do. Nothing can stop him.

"He's been out learning to ride his bike without stabilisers."

The family were supported with accommodation by The Sick Children's Trust throughout Xander's hospital treatment, and Mrs Pickering said she feels "so grateful" to them.

The Sick Children's Trust runs 10 free "Home from Home" accommodation sites around the country including Stevenson House, which supports families of children being treated at The Royal London Children's Hospital.

Although the accommodation is provided free of charge to families, it costs the charity £30 to support a family for one night.

"We live 70 miles away from where Xander's treatment has taken place, and knowing we had Stevenson House meant we never felt too far away," said Mrs Pickering.

"We'd like to say a special thank you to The Sick Children's Trust for keeping us by our son's hospital bedside throughout his treatment.

"We are very nervous about Xander starting school because of his bowel problems which have resulted from his bottom being surgically created.

"But he is so strong we know that he will take school in his stride and do what he does best."

According to NHS data, anorectal malformations affect around one in 5,000 babies.

It is unclear why this occurs but is sometimes because the process of development in the womb is not complete.

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