Daniel Rutherford, four and brother Matthew, 2, who live in the Benwell area of Newcastle, have a rare genetic condition called Muenke Syndrome which causes a form of crainosynostosis.
Daniel also has ventriculomegaly which causes (pressure on the brain). The condition was suspected when mum Rachel, 36, was pregnant with Daniel and confirmed when he was five months old.
His first operation at ten months was to put distractors in to pull the back of his skull apart to allow room for his brain to grow .and another a few months later to remove the distractors. At 18 months, he underwent a full reconstruction of his skull involving many metal plates, bolts and metal wiring to hold his skull together , and may need facial reconstruction in the future. His brother Matthew underwent the same reconstruction surgery and needed a further skull operation for an infection in his head.
Daniel now has sensory processing disorder and his parents Rachel and Jamie, both 36, 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: ‘Daniel is 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 are holding a ‘bucket shake’ collection, helped by extended family, on Northumberland Street in Newcastle City Centre on Dec 10, 11, 12 and 13.
‘Please do come along and say ‘hello’ and donate whatever you can,’ Rachel said. ‘Every penny helps. We’re especially keen to get Daniel a support dog – we met a standard poodle recently which was so gentle with him. But I nearly fell through the floor when I saw the price of them!’
The family 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.’