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Benwell family has two small sons with rare genetic condition requiring several major skull operations

Daniel Rutherford, four and brother Matthew, 2, have a rare genetic condition called Muenke Syndrome which causes a form of hydrocephalus (pressure on the brain). The condition was suspected when mum Rahcel, 36, was pregnant and confirmed when Daniel was five months old.

 

His first operation at five months was to pull sections of his skull apart to allow room for his brain to grow.and another a few months later to close the gap. At 18 months, he underwent a full reconstruction of his skull involving several metal plate, and may need facial reconstruction in the future. His brother Matthew underwent surgery six months ago.

 

Daniel now has sensory processing disorder and his parents Rachel and Jamie are fundraising to buy him sensory equipment to improve his quality of life. They are hoping to buy a sensory tent, lighting, a weighted blanket, a larger 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.

 

Rachel said: ‘He’s easily overwhelmed and will either get very distressed and upset or aggressive, throwing things and pushing them out of his way.’

 

‘Sensory equipment will help him with his everyday struggles.’

 

The family is appealing for items to use in an online raffle. They are support 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 and provides access to a registered charity providing more effective and efficient ways of fundraising, unlike traditional crowdfunding.

 

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/

 

For more information, images or to arrange interviews please contact Catherine Cooper on 00 33 5 61 69 57 89, 00 33 6 09 03 55 88 or mail@catherinecooper.net

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