Baby Roman is kept in hearts and minds

Roman Greenlees at home with mum Rachael and dad Stuart who are thanking the community for fundraising towards a sensory room

Roman Greenlees at home with mum Rachael and dad Stuart who are thanking the community for fundraising towards a sensory room

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The Berwick parents who tragically lost their infant son to an incredibly rare disease are looking to honour his memory annually after an epic fundraising effort.

Roman Greenlees passed away in August 2013 having just turned one.

Shortly after being born, he had been diagnosed with Alpers disease, a very rare degenerative condition.

His parents, Stuart Greenlees and Rachel Laidlaw, were left stunned by the help they received from friends, family and even strangers.

The community’s response was astounding: over £10,000 was raised, including BBC comedian Jason Manford’s donation of the profits from his Berwick shows.

Lowick Ladies also hosted Hearts Ladies in a fundraising football match at Shielfield.

This outpouring of generosity allowed Rachel and Stuart to create “good, lasting, happy” memories of their son, as well as the installation of specialist sensory equipment in his bedroom.

Now an evening of entertainment put together by Stuart and Rachel -helped by dozens of members of the community - has raised more than £2,700 to fight Alpers disease.

Their special Charity Ball was held at Berwick Rugby Club on Saturday, and featured a three course meal, live music and an auction.

The proceeds are going to the Ryan Stanford appeal for reserch into Alpers disease. The appeal is named for Ryan, a Lancaster infant who suffers from the same disease as Roman.

“It went off well, and I think that everybody who was there had a really good time,” said Stuart.

“The important thing is that the money goes towards fighting Alpers.”

And the fundraising does not stop there.

Rachel had planned to go skydiving at Kinross, and still intends to make the jump, which has had to be rearranged because of the recent weather conditions.

Added to that, Stuart said: “Myself and Roman’s grandad Kevin are going to be taking part in the Great North Run, this September.

“That won’t be easy, in fact it’ll be thirty miles of pain, but it will definitely be worth it.”

Stuart went on: “The ball has made us think that we would like to do something to remember Roman annually.

“It wouldn’t necessarily be a ball like this again, it would just be some kind of event to remember him by.”

Alpers’ disease is a progressive degenerative disease of the central nervous system that occurs mostly in infants and children.

There is no cure for Alpers’ disease and, currently, no way to slow its progression.

Children diagnosed with to usually die within their first decade of life.

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