Baby’s plight forces dad to call for ‘safety net’
PUBLISHED: 12:00 09 May 2012
A WORLE father aiming to get better support for parents with terminally ill children is looking for help from Weston’s MP, after learning his son may not live to see his first birthday.
Neil Lewis, aged 27, of Canterbury Close and Charmaine Malcolm, aged 22, are the parents of 11-week-old Ollie Lewis, who was diagnosed with brain damage soon after being born in February.
They are currently fighting to get support and financial aid after being told by doctors that Ollie would not live past a year after being starved of oxygen to his brain during birth.
This was due to a late delivery which occurred despite his parents making numerous attempts to get examined by their midwife at St Michael’s Hospital in Bristol.
Neil and Charmaine are now awaiting the results from the hospital’s investigation.
After the couple spent weeks living on the hospital ward, making trips for check-ups and spending more money on electricity which was needed to charge Ollie’s suction machine 24-hours-a-day, to help him breathe, they were left with a £1,800 hole in their pocket, with no extra money to pay their rent or bills.
Neil said: “In addition to this heartbreaking ordeal there was also the worry of trying to keep a roof over our heads, keeping gas and electricity on and where the next meal was coming from, while trying to look after a terminally ill child.”
Neil said there should be a safety net put in place to help those who are put in such unusual situations and decided to get help from MP John Penrose.
Neil said: “John was extremely helpful and said he agreed 100 per cent that something needs to be put in place to financially help families who are looking after terminally ill children.
“John assured me that he will discuss with the Secretary of State for Work and Pensions, Iain Duncan Smith, a system which can be put in place to act as an immediate financial support net for families in such heartbreaking times.”
Mr Penrose said: “Everyone’s hearts go out to the Lewis’ over their struggle to make Ollie’s life as full and comfortable as possible.
“Thankfully, cases like theirs are rare but I am going to be taking it up personally with Iain Duncan Smith to see whether there is anything we can do to make those first desperate few weeks a little easier to cope with in future.”
Neil added: “We both understand this may be a process that may take some time to work out logistically but we have started the ball rolling.”
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