A FUNDRAISER has been launched for an eight-month-old Wrexham child who has one of the world’s rarest diseases.

Archie Crute has Menkes disease – and is one of just three babies a year (about one in 300,000) to be diagnosed in the UK.

Menkes syndrome is an incurable disorder that affects copper levels in the body. It is characterised by sparse, kinky hair; failure to gain weight and grow at the expected rate (failure to thrive); and deterioration of the nervous system.

The Leader:

Tragically, babies with Menkes disease usually live between two and three years – and for Archie’s devastated first time parents, Daniel Crute, and Becky Davies, it’s now about making memories.

Daniel, 34, and Becky, 33, said: “We have been looking forward to this forever, and everything seemed to be going ok.

“But around May we noticed that something with Archie wasn’t quite right – he seemed very clumsy, unable to pick things up and wasn’t gaining weight. And then he started having seizures."

Archie was taken to the children’s ward at Wrexham Maelor Hospital for tests.

“He underwent test after test, and all came back ok. No one knew what was wrong with him," the couple said.

But after 10 days in hospital came the devastating news that Archie has Menkes.

The Leader:

Dan and Becky described the feeling of getting the news as “surreal”, and said it was “devastating” for them and their family. 

"We have managed to keep it together," they said. 

"But we know things are only going to get worse and we are in for a rough ride."

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The couple added: “We are incredibly grateful to the team at Wrexham Maelor Children's Ward who worked 24 hours a day to make sure Archie was getting the treatment he needed. Also to the consultants, doctors, nurses and NHS staff in Bangor, Cardiff, Manchester, Liverpool and Birmingham who all played their part in Archie's diagnosis. We would be truly lost without our NHS. Everyone at Hope House Children’s Hospice have been amazing, too. 

“We are now focused on 'making memories' with our little man. The support we have received from family and friends has been overwhelming, we are so incredibly grateful to them. Also, the support we have received from Asda and Morrisons where we work has been amazing.”

A fundraiser set up by family friend Zara Roberts to help Dan and Becky make special memories with Archie without a financial burden has raised over £3,000.

To donate to it. Please visit https://bit.ly/3HPBXhJ