St Albans fundraiser in memory of tragic boy Ben

PUBLISHED: 15:19 24 May 2013

Ben Vassiliou Varney

Ben Vassiliou Varney

Archant

THE parents of a “beautiful baby boy” who died suddenly after being diagnosed with a rare disease will mark their son’s second birthday by holding a special fundraising evening in St Albans.

Owen and Maria Vassiliou Varney are hosting the event this Saturday at Sopwell House Hotel to raise money for Keech Hospice Care, where their baby Ben spent his last days.

At just 11 months old Ben was diagnosed with Alpers’ Syndrome, an incurable degenerative neurological disorder, and within a few short weeks he sadly passed away.

The problems started soon after he was born in May 2011 when he was having difficulty feeding and at six months he was prescribed with medication for suspected stomach problems.

After that he seemed to be making good progress and was beginning to sit and develop his “happy-go-lucky” personality. But he suffered another set-back when he developed pneumonia in December and spent his only Christmas in hospital.

Over the next few months his parents became increasingly concerned about his inability to swallow or digest certain foods, and the couple’s fears were confirmed when a few weeks later Maria woke to find Ben having a seizure.

Their son was immediately rushed into hospital and after several days of tests they were told the crushing news he had an incurable disease.

“It was every parents’ worst nightmare. The disease took him so quickly; he woke up with a jerking movement and four weeks later he was gone. The fact there is no cure as a parent I felt helpless,” Maria explained.

Owen and Maria then had to make the difficult decision to transfer Ben to Keech Children’s Hospice in Luton where his brother Jack and other relatives were able to join them during his final few days.

Maria continued: “With Ben’s situation it was very sudden and we only had 11 days to digest what had happened and through that time not only was Keech somewhere that took extreme care and consideration with Ben but also it was an area where we could all be together. That enabled us to be a family for five very special days.”

She added: “Ben made our family complete. He was a very smiley, happy baby and considering how much discomfort he has in at the time it never fazed him. He is badly missed.”

Ben’s parents never had the chance to celebrate his first birthday and this is why they have chosen to hold Saturday’s fundraiser on the day he would have turned two-years-old.

The event runs from between 6.30pm until 12am and includes a three-course meal, auction and live music. Tickets cost £85 and can be purchased by emailing bensbutterflyball@hotmail.co.uk or calling Maria on 07540262908.


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