Parents’ plea for cash to help son fight rare illness
THE parents of a four-year-old born with a rare genetic condition have launched an appeal to buy special sensory equipment for him.
Daniel Rutherford and his two-yearold brother Matthew, who live in Benwell, 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 and now has a sensory processing disorder.
His parents Rachel and Jamie, both 36, have set an initial target of £6,500 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.
Rachel said: “Daniel is easily overwhelmed and will either become 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 holding a ‘bucket shake’ collection, helped by extended family, from tomorrow until Monday on Northumberland Street in Newcastle.
Rachel added: “We are 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 suspected Daniel had Muenke Syndrome when Rachel was pregnant with him and it was confirmed when he was five months old. It affects just one in 30,000 babies and 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.
Daniel’s first operation took place when he was just 10 months old, with distractors put in to pull the back of his skull apart to allow room for his brain to grow.
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 he may need facial reconstruction.
Matthew underwent the same reconstruction surgery and needed a further skull operation for an infection in his head.
In July we wrote about the family’s daily fight for their kids.
Rachel said then: “I love my kids and I would not change them for the world.
“I would not 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.”
The family 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 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 delighted to be helping Daniel and his family with their fundraising and wish them all the best.”