A Kirkcaldy youngster with special needs finally has his smile back after taking life changing medication
Gino Londra has a chromsome disorder, global development delay and epilepsy and had been suffering from as many as 200 fits in a day until he started taking Bedrolite CBD oil around eight months ago and his parents say it has cut his seizures by an an incredible 80 per cent.
But his treatment comes with a hefty price tag as parents Charlene, 32, and Innes Londra, 33, must pay £750-a-month for the medical cannabis because their five-year-old son isn’t eligible for it on the NHS.
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Hide AdAs a result, Charlene and Innes have been tirelessly fundraising to secure the cash they need to pay for the private prescription and they worry that if they aren’t able to find the funding for his medication he will go back to suffering hundreds of seizures again.
Charlene works at Kirkcaldy beauty salon Bliss while husband Innes stays at home as full time carer for Gino.
She said: “I was so nervous about getting this medication for Gino incase it didn’t work but we had tried everything else from special diets, to implants and other drugs but nothing was controlling his seizures which were as much as 800 a month.
"I was very sceptical but it is actually working and it means a better quality of life for all of us. Sometimes he was having 200 fits a day but the most on a bad day now is about four since he started taking Bedrolite twice a day. It is amazing.”
She continued: "Before he started taking it he couldn’t crawl but now he is crawling and what has been really nice is that he is smiling again. His seizures took away his smile for months.
"He was also sleeping five times a day before, but now he is alert and is like a little whippet as he makes his way through the house! These small steps are huge things for a parent who has a child with disabilities.”
Despite his symptoms, Gino does not match the strict criteria for medical cannabis available on the NHS as it is only prescribed for particular forms of epilepsy.
Charlene said there is a possibility he could get a special licence for the NHS medical cannabis but she said there is a big difference between that and the private prescription: “The NHS one is pure CBD and the private one is CBD plus THC – it is the THC which has been shown to help kids with epilepsy so I would be frightened to take him off something which actually works and is prescribed by a UK doctor to put him on an NHS prescription which doesn’t have all the benefits the private prescription has.”
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Hide AdCharlene thanked everyone who has helped her with fundraising including clients from Bliss Beauty. Charlene and salon owner Christine Cunningham-Smith have organised a couple of online fundraisers – offering participants a relaxing facial experience – with the last one raising nearly £800 for Gino’s prescription pot.
Another one is taking place on Sunday, February 28.
Charlene added: “People have been so generous and Innes and I are just so thankful for everyone’s help.”