A Bexhill couple whose son has a life-threatening condition took part in a protest outside Parliament in a bid to get a ‘vital’ drug treatment funded.
Lottie Norton and Ed Usher’s two-year-old Freddie has tuberous sclerosis complex (TSC), a rare genetic disease which allows tumours to develop in multiple organs, including the brain. In Freddie’s case, these cause epilepsy, and autistic behaviours.
The Tuberous Sclerosis Association (TSA) organised the protest to fight for the drug treatment Everolimus to be funded for children with inoperable brain tumours.
The drug has had great success at reducing tumours in tests and Ms Norton, of Buckhurst Road, believes it should be funded as about 20 children a year die avoidable deaths.
“It will give us hope basically. If Freddie’s illness does progress, eventually it could become fatal and without this treatment there’s no hope which is a situation no parent should have to face, especially when there is proven treatment already sitting on pharmacy shelves,” she said.
NHS England promised to approve funding before April but it was given the lowest priority for funding as it was deemed ‘unaffordable’ despite being cheaper than kidney dialysis.
Freddie, who attends Battle Abbey Nursery, has autistic behaviours and Ms Norton said it can be tough trying to do anything socially with him, which is extremely isolating.
They cannot plan too far ahead as he can become unwell so suddenly, so we have to take each day as it comes.
Following the protest, Greg Mulholland MP asked Theresa May during Prime Minister’s Questions what she could do to help with the #fight4treatment campaign and she agreed to meet MPs about it, something Ms Norton deemed a huge success.
The family also met Bexhill MP Huw Merriman who was very supportive of their cause and said it was an ‘absolute pleasure’ to meet them.
“It is always great to host constituents in Parliament but it was a particular pleasure to meet a family who have to endure much but do so with such great determination and courage,” he said.
Ms Norton is raising money for the TSA through a 10km run. To donate, visit www.justgiving.com/fundraising/lottienorton.
If anyone would like to get involved or find out more about Tuberous Sclerosis, please visit www.tuberous-sclerosis.org.
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