Fighting for law change to help Olivia
THE parents of a baby who suffers from a rare congenital heart defect have joined forces with families across the country to fight to make the future brighter for their children.
The Wakefield Express featured the story of little Olivia Rhodes last week who has battled through two major heart operations in her seven-month life.
She was born with the rare condition of hypoplastic left-heart syndrome which meant the left side of her heart did not develop, cutting off blood flow to her vital organs.
Without surgery she would have died.
She is one of just two youngsters in the region with the condition and will need further surgery throughout her life and eventually a heart transplant.
Her mum and dad, Rebecca and Shane Rhodes of Handsworth Road, Kettlethorpe are now joining with parents across the country to raise the profile of congenital defects like Olivia's in a bid to try and get laws around prescription medicines changed.
As things stand when Olivia becomes an adult she will have to pay for her medication. This could run to hundreds of pounds a month for her parents.
Her mum said: "When Olivia grows up she is going to need a lot of medication. As current laws stand she will have to pay for prescriptions herself. It is not a case that she needs one-off medication for her condition - she will need it constantly.
"We are trying to highlight the situation for people like Olivia who were born with these kinds of defects so that they are not forced to pay for their prescriptions because it is nothing they can help.
"For the vast majority of people it is their decision whether to drink or smoke or take regular exercise and are given the choices whether or not to look after their hearts. People with congenital heart defects are denied this choice in adult life."
The issue is to be debated in the House of Commons on October 19 when MP Ivan J Henderson from Horwich will present a bill in a bid to raise awareness of the issue.
Wakefield MP David Hinchliffe told the Express: "What I would support is a look at the wider issue of who is exempt and who isn't exempt. Realistically what we need is a much more wide ranging review of the conditions that are currently in place."
The Rhodes family became involved with the awareness campaign through the charity Little Heart Matters who are fighting to raise awareness of conditions such as Olivia's as well as provide help and support to families.
For information go to www.lhm.org.uk.
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Saturday 04 February 2012
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