Fife parents successful fundraising campaign to buy life changing medication for their son

Charlene and Innes Londra started to collect funding in January as they began to look at private treatment for their son Gino who has a chromsome disorder, global development delay and epilepsy.

The couple wanted to get medication privately for their four-year-old as his seizures started getting worse from January onwards and they also resulted in him not breathing for minutes at a time.

Unfortunately the treatment they believe can help him, Bedrolite, is only available privately so they had fundraise so they could afford to buy it for him.

Charlene, who works as at local beauty salon, Bliss, explained: “Gino has epilepsy due to having a chromosome disorder called 1p36 deletion syndrome and he has been having seziures since he was two weeks old.

“We researched and spoke to numerous families who have tried cannabis products for their children with some amazing results. We raised £3500 from January to July and just last week we had a Zoom call with a private cannabis doctor in London who wrote us a private uk prescription for Bedrolite.

“Currently in the UK the only available cannabis-based product is Epidiolex which is only given to children with one of two syndromes ... which Gino doesn’t have. It is a pure CBD drug, whereas Bedrolite has properties which have worked well in treating epilepsy.

“We start the treatment, which is legally prescribed, in four weeks time but the cost for five/six weeks worth of medicine is £827. So realistically we have enough for maybe four months.

“We have tried every drug, implant and diet on the NHS and we have no more options except this.

“Parents of children with epilepsy know there is no cure or miracle treatment but this is an option, where we have no more on the NHS.”

She continued: “An option to give our child a bit of relief from daily seizures which have been over 160 in a day. So we don’t know if it will work but, we as parents have to try at any cost. Even if there is a reduction in seizures to improve his quality of life it would all be worth it.”

The family have been fundraising through gofundme, ginosjourney on Instagram and Facebook as well as Ggslittlestar on Facebook and Instagram where they have sold gifts and jewellery to all help pay for the treatment.

Charlene said there are currently two children in the UK who have Bedrolite on prescription but they were only able to get it through an emergency interim licence after high-profile campaigning.

One of the parents of those youngsters has been campaigning to fight for change for families like theirs and Charlene’s in the hope that one day the NHS will fund the drug that helps their children.

Charlene added: “In the meantime, the fundraising will be ongoing with no real target. Fingers crossed for it to work because it would be life changing for all of us.”

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