A Chester family is staunchly backing a national campaign to allow sick children access to medicinal cannabis.
The Braun family has appeared on several national television programmes highlighting the controversial issue, about which they know only too well as their three-year-old son Eddie suffers from a rare but catastrophic form of epilepsy known as infantile spasms.
The condition is treated as a medical emergency and rapidly controlling the seizures is vital but no conventional treatments have worked for Eddie, who tried various frontline treatments as well as following a ketogenic diet.
When parents Ilmarie and Alex heard that using CDB oil (cannabidiol) could be extremely effective in treating intractable epilepsy, they were anxious to try it without getting medical advice.
Although CBD is legal and versions are available to buy on the high street, it is not on prescription, so none of Eddie’s medical team were able to advise the Brauns on using it.
But on the one year anniversary of Eddie's seizures, Ilmarie decided to start using CBD. Over the following 18 months she says she saw a noticeable reduction in seizures, and the little boy became much happier and more alert.
Their experience compelled Ilmarie and Alex, who are also parents to son Thomas, to back the national campaign families4access which fights to access cannabis medicine for sick children.
They were one of eight families standing in solidarity with Charlotte Caldwell and her son Billy who hit the headlines earlier this month after being stopped at Heathrow Airport with illegal cannabis oil.
Ilmarie, who has been speaking about the campaign on various national news programmes, said: "We've been very nervous about talking publicly about this because although we have discussed with our son’s medical team that we would like to try medicinal cannabis it's very different talking about it so publicly.
"But we have been encouraged by the other strong families out there campaigning for their child, like Charlotte Caldwell and Hannah Deacon, Alfie Dingley’s mum."
Both Billy and Alfie, who also suffers from epilepsy, were eventually granted special licences to use the drug and Home Secretary, Sajid Javid, announced the government will now review reclassifying cannabis for medicinal use in the wake of the challenges faced by children with epilepsy.
"The licences granted to Billy and Alfie are hugely positive, as is the discussion in government at the moment," said Ilmarie. "But we still need to know what the real, concrete steps will be for families like ours, like all the others, to apply for medicinal cannabis for our children.
"We remain anxious that it be quick, achievable and affordable, and will keep working hard to push through the changes needed.
"I believe over 200 families have registered with the families4access campaign, we deserve this chance to help our children lead happier, healthier lives," she added.
