Family raising awareness for tumour condition after Rowan's diagnosis

Known as NF1, the condition is caused by a faulty gene and symptoms can vary in severity from person to person.

Rowan has NF1 which has caused multiple large tumours in his body (Image: Supplied)

In Rowan's case, it has caused several plexiform neurofibromas - large benign tumours growing in his leg and brain stem, putting significant pressure on his body.

Mum Kathryn wants to raise awareness for NF1 to help people be more open about talking about it (Image: Supplied)

Mum Kathryn said: "Rowan was poorly from when he was born, he has a condition called MCAD which affects his ability to break down fat, so he's always been backwards and forwards to the hospital.

"At the end of 2019 I noticed he had a lump in his neck and we took him back to the specialist and they sent him for an MRI.

"They found a tumour that was going from his brain stem down to and around his ribs - it was taking up most of his body."

In August 2020 Rowan underwent serious surgery to debulk the tumour in his neck, and a large chunk was removed - but doctors couldn't take the bit out of his brain stem, which continues to grow back.

The tumour in Rowan's leg goes from his toe up to his thigh.

Kathryn and husband Simon have been told that Rowan may not make it to 10 years old.

"I've been throwing myself into raising awareness," Kathryn continued.

"NF1 is quite common, and if we can spare another family going through this then it won't have been in vain."

Most cases of NF1 cause birthmarks known as café au lait spots - light or dark brown patches on the body - non cancerous tumours, clusters of freckles in unusual places and problems with bones, eyes and nervous systems.

Kathryn and seven-year-old son Finlay both also have NF1 (Image: Supplied)

In around 50 per cent of cases, the gene is passed from a parent to the child - as is the case for Rowan.

Teaching assistant Kathryn, and her eldest son, seven-year-old Finlay, also have NF1.

Finlay also hopes he can use his status as "Prince of Shefford" to raise awareness for his brother.

Finlay was crowned Prince of Shefford, which means he will be invited to represent the town at special events such as the Christmas Lights switch on (Image: Supplied)

Kathryn added: "Finlay's doing the best he can - he's got lots of questions which we are trying to answer honestly and in an age appropriate way.

"I'm very proud of both of them. Finlay is coping remarkably well for someone of his age."

The family have planned a trip to Disney Land in August this year, with the help of a JustGiving page which has already raised the £3,000 target.

To find out more about neurofibromatosis and other types of nerve tumour, go to nervetumours.org.uk.