Benwell mum tells of her daily fight for sons born with rare skull condition


Little Daniel and Matthew Rutherford have been through more in their first years than many do in a lifetime.

Born with a rare genetic condition that caused the bones in their heads to fuse too early, the brothers have both undergone major operations on their skulls already, and face further surgery in the future.

The boys’ condition, Muenke Syndrome, affects just one in 30,000 babies, and has left the brothers with a series of difficulties.

Four-year-old Daniel suffers from problems with his speech and has sensory processing disorder, which can make everyday life overwhelming for the little boy.

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Meanwhile two-year-old Matthew has difficulty eating and had to undergo a further operation 12 weeks ago for an infection in his head.

The brothers are cared for at their home in Benwell, Newcastle, by devoted parents Jamie and Rachel.



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As she prepares to wave Daniel off for his first day of school in September, Rachel has lifted the lid on what it’s like to look after two disabled children.

And the 36-year-old has told of her fears for her sons’ future, and her daily struggle to hide her emotions from her little boys.

Rachel 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. « 



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Daniel and Matthew Rutherford

Rachel was pregnant with her first child Daniel when medics began to suspect he may have Muenke Syndrome, and the condition was diagnosed when he was five months old.

« I knew from being six months pregnant that there was an issue with his head, but they didn’t know what was going on, » Rachel explained.

Muenke Syndrome causes a form of craniosynostosis, a birth defect in which the bones in a baby’s skull join together too early – before the brain is fully formed.

As the baby’s brain grows, the skull can become more misshapen.



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Daniel after his birth

Daniel was just 10 months old when he had to undergo his first operation which involved putting specialised devices called ‘distractors’ in his head which were used to pull his skull apart to make room for his brain to grow.

« The first surgery was the worst, » said Rachel. « I think when they go into hospital and have their surgeries you go onto autopilot because you have to be strong and put your feelings aside for them. They need you, they can’t see you break down.

« It’s only months later that you start to think about things.

« For the first three days his head was bandaged and I saw these little metal devices sticking out.

« I think what got us the most is that I had to turn the distractors myself to pull his skull apart.

« It was really difficult. It wasn’t as hard to do as I thought it would be, but it was the thought of it in my head.

« But Daniel was never ever phased by it. He used to play with it. »

A few months after his first operation Daniel had to go back under the knife, at Liverpool’s Alder Hey Children’s Hospital, to have his distractors removed.



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Daniel after undergoing surgery

Then at 18 months he underwent a full reconstruction of his skull which involved inserting metal plates, bolts and metal wiring to hold his skull together.

Meanwhile Rachel fell pregnant with her second son. Knowing that Muenke Syndrome affects more boys than girls the mum began to fear the worst when she discovered her baby’s gender.

« Daniel was going to be our only child, but then I fell pregnant with Matthew, » she explained.

Rachel was offered an amniocentesis test, but after being told they would have to take cells from the placenta which could mean a higher risk of miscarriage, she declined, and continued her pregnancy with regular scans.

And it was Rachel herself who spotted signs of the condition during a scan when she noticed the shape of her unborn baby’s head.



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Matthew Rutherford

« Everything was looking fine, » she said. « But when I was 28 weeks pregnant I looked at the scan and I knew straight away.

« The midwife kept saying; ‘You know it could be anything.’ But I had seen it before and I could recognise it myself. I was absolutely devastated. »

The coronavirus pandemic delayed Matthew’s first operation, but he finally underwent the same reconstruction surgery as his brother six months ago.

And he needed a further skull operation 12 months ago after developing an infection in his head.

« With Matthew’s surgery I struggled more than with Daniel, because I knew exactly what they were going to do, » said Rachel. « Now I can’t get the image out of my head of him lying with his skull open. »

Rachel is now a full time carer for both her boys and is now preparing for the next milestone in Daniel’s life, his transition from nursery to a mainstream school in September.



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Rachel Rutherford and son Daniel

But as Daniel now suffers from a sensory processing disorder which can leave him distressed and overwhelmed, she is worried about how he will cope.

« With Daniel it’s really difficult. Every day a new sensory issue occurs, » she said. « He’s easily overwhelmed and will either get very distressed and upset or aggressive, throwing things and pushing them out of his way.

« Daniel has been in and out of hospital since he was five months old. He’s almost been institutionalised.

« When he’s at nursery he goes along with everything and he tries to be like his friends, but when he comes home he explodes. He can’t regulate how he’s feeling. Sometimes when there’s lots of people, even in my house, he can’t cope.



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Daniel and Matthew Rutherford

« Daniel classes me as his safety net so I have got to be there 24 hours a day for him, if I’m not there he struggles. »

And Rachel admits that the prospect of sending her little boy to school terrifies her.

« I’m absolutely petrified of him going to school, » she said. « Children can be very cruel.

« His scars are visible, you can see them. Daniel is of an age now when he’s starting to ask questions about why he has got a scar. Even at nursery there’s been children that tell him he’s got a ‘broken head’.

« He’s only four, how do I explain to him this young? »



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Matthew Rutherford

Rachel and Jamie are now fundraising to buy Daniel some specialist sensory equipment which they hope will improve his quality of life. They are hoping to buy a sensory tent, lighting, a weighted blanket, a trampoline, sensory board, specialised ear defenders, visual aids, a sensory bed and possibly a therapy dog.

They have set an initial target of £6,500 and they are appealing for items to use in an online raffle.

The Rutherfords are supported by children’s charity Tree of Hope which helps families to fundraise for children’s operations, therapies and equipment that are unobtainable via the NHS.

Tree of Hope CEO Gill Gibb said: « We are delighting to be helping Daniel and his family with their fundraising and wish them all the best. »

To donate to Daniel’s fund, visit https://www.treeofhope.org.uk/daniel-rutherford/

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