A doting mum has opened up about her daily fight to care for her two sons — both born with a rare skull condition affecting around one in 30,000 births.

Daniel Rutherford, four, and brother Matthew, two, have Muenke Syndrome, a rare condition that causes the skull bones to join together too early and can lead to a range of challenges.

Both boys have already undergone major skull surgeries and may need further treatment in the future.

Their parents, Jamie and Rachel, care for them at home in Newcastle upon Tyne. With Daniel preparing to start school in September, Rachel has shared what life is like for their family.

Daniel has speech difficulties and sensory processing disorder, which can leave him easily overwhelmed. Matthew has difficulty eating and is still recovering from recent surgery.

Rachel, 36, said: “I love my kids and I wouldn’t change them for the world. I wouldn’t change anything about them, they are just unique in my eyes.

“There are times when it breaks my heart, but I never ever let the kids see me cry. I wipe my tears away and I come back in and I’m their mam again.”

Rachel first learned there could be an issue with Daniel’s head during pregnancy, and he was diagnosed with Muenke Syndrome at five months old.

The condition causes a form of craniosynostosis, where the bones of a baby’s skull join together too early, potentially affecting how the skull develops as the brain grows.

Daniel was just 10 months old when he underwent his first operation, involving specialized devices called “distractors” to create more room for his growing brain.

“The first surgery was the worst,” Rachel said.

“Daniel was never ever phased by it. He used to play with it.”

A few months later, he returned to hospital to have the devices removed. At 18 months, he underwent a full skull reconstruction involving metal plates, bolts and wiring.

When Rachel became pregnant with Matthew, she noticed signs of the same condition during a scan at 28 weeks.

“I looked at the scan and I knew straight away,” she said. “I was absolutely devastated.”

The pandemic delayed Matthew’s first operation, but he eventually underwent a similar reconstruction procedure. He also required another operation after developing an infection.

“With Matthew’s surgery I struggled more than with Daniel, because I knew exactly what they were going to do,” Rachel said.

Now a full-time carer for both boys, Rachel is preparing Daniel for his move from nursery to mainstream school.

She worries about how he will cope with sensory challenges and how other children may react to his visible scars.

“Children can be very cruel,” she said. “Daniel is of an age now when he’s starting to ask questions about why he has got a scar.”

Rachel and Jamie are now fundraising for specialist sensory equipment to help Daniel manage everyday challenges. They have set an initial target of £6,500 and are appealing for support through an online raffle.