Parents Of Baby Boy Give Back To Hospice That Helps Care For Him
By Helen MacGregor
The devoted parents of a baby boy who is severely brain damaged because midwives failed to notice his heart rate dropping dangerously low during his birth are planning a ‘summer extravaganza’ in a bid to raise money for the hospice that helps care for him.
One-year-old Ollie Lewis’ parents, Neil Lewis and Charmaine Malcolm, are organising the Legends of Weston concert on the Grand Pier on 7 June with all proceedings donated to Children’s Hospice South West, which helps children with life limiting illnesses.
Five of the region’s top musical acts will headline the event including Harrisen Larner-Main, S.E.W, Ryan Inglis, Cliff Moore and The Style. The event is being organised with help from The Grand Pier and a group of industry professionals who currently work with chart-topping stars such as Calvin Harris and The Hoosiers to put on a spectacular show that will not disappoint.
Ollie suffers a catalogue of disabilities as a result of his brain being starved of oxygen for so long during birth, including blindness, epilepsy and cerebral palsy, meaning he needs round the clock care as he barely sleeps and requires pump feeding for 20 hours per day.
Doctors at St Michael’s Hospital in Bristol told Neil and Charmaine that it was unlikely he would ever breathe on his own or open his eyes, but he has defied all expectations.
Ollie and his family receive help from Charlton Farm in Bristol, run by Children’s Hospice South West, which provides families with five weeks a year respite care providing one to one specialist care for children with additional and complex needs who have life limited illnesses.
Ollie’s dad Neil, who has had to give up his job as a recruitment consultant, said: “Due to Ollie's brain damage and illness he sometimes only sleeps for four hours a day which is why it is vital that the Charlton Farm services continue to help children and families like mine.
“The annual running cost of the farm is £3M a year and it only receives a £60,000 grant from the government so relies heavily on donations to provide the care and facilities it offers.
“We are taking a film crew to Charlton Farm in the next few weeks to create VT's which will be played on large screens between each act explaining Charlton Farm’s services and what the money will go towards helping.
“The event is set to be a summer extravaganza and we hope that local people will get together, let their hair down and help raise lots of money for a truly inspiring local charity.”
Neil and Charmaine, who live in Weston, have instructed medical negligence experts at law firm Irwin Mitchell in a battle for justice against University Hospitals Bristol NHS Foundation Trust and to help gain the necessary funds for Ollie’s future care and rehabilitation.
Their solicitors, Julie Lewis and Natalie Jones, confirmed that at a complaint meeting held by the Trust, they agreed that mistakes had been made and the Trust had let them down.
Julie Lewis, from Irwin Mitchell’s Bristol office, said: “Neil and Charmaine have shown tremendous dedication in caring for Ollie and their love and support is testament to how far he has progressed during the first year of his life.
“However, when things get too much, Charlton Farm provides invaluable respite care that gives the couple time to recuperate on-site, safe in the knowledge Ollie is being given the treatment and support he needs.
“Neil and Charmaine dedicate their lives to caring for Ollie and their willingness to give back to the services that help them is truly admirable.
“We see how important these hospices are to our many clients and families with similar injuries to Ollie’s so are delighted to support the event and are looking forward to heading to the Grand Pier to see local talented artists perform, all in aid of a great cause.”
Tickets for the event cost £6.50 and are available to buy now from the Grand Pier retail shop and online at www.grandpier.co.uk/events-guide Doors will open at 7.30pm.
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