Newcastle mum's battle to break stigma over sons' rare skull condition

Daniel, four, and Matthew, two, have a rare genetic condition which effects the development on their skull Credit: ITV TYNE TEES

A family from Newcastle say they want to break the stigma attached to their sons' genetic condition which has seen them undergo several major surgeries on their skulls.

Brothers Daniel and Matthew Rutherford, from Benwell, have Muenke Syndrome, which effects the development of their skulls.

Aged just four and two, the boys have been through more than most in their short lives including endless trips to hospital and skull reconstruction surgery.

Now their devoted parents want to raise awareness of the condition in a bid to stop people staring at the boys in the street.

Mum Rachel said: "These are their battle scars - they are my warriors. We walk out front door, we go out and people point at them, stare at them and whisper.

"Some people will ask, some people don't ask. I would rather they ask. I don't want people staring at them they are children.

"It is something I am not ashamed of and I don't want the boys to be."

Muenke Syndrome is a genetic condition that effects one in 30,000 babies.

Daniel Rutherford was diagnosed with Muenke Syndrome as a newborn baby Credit: FAMILY PHOTOGRAPH

Daniel was just months old when he was diagnosed. The bones in his skull had fused together prematurely, reducing the space for his brain to grow. 

Operations followed to open his skull up - surgeries his parents had to endure again when his little brother Matthew was born.

Speaking of Matthew's diagnosis, his mum said: "Absolutely heartbreaking, I didn't think I could go through it again but they are my babies. They are mine.

"I've never known two children who have been through what they have been through and still be smiling at the end of it. They get a simple cold, they just smile through it. They're used to it now."

Daniel, left, and brother Matthew, right, have both undergone major surgeries due to the rare skull condition they have Credit: FAMILY PHOTOGRAPH

Daniel also suffers from seizures and both boys have vision and hearing difficulties.

The family are now fundraising to buy sensory equipment and a therapy dog.

"I want them to have everything they need to fulfill their life fully," said Rachel. "I could honestly burst with pride.

"The smallest little things people take for granted, the milestones. They're things I thought my boys would never do."

The countdown is now on to Daniel starting school - where this family's drive for acceptance and awareness will be spread even further.