Nathaniel Leahy has an extremely rare form of epilepsy and anti-epileptic drugs do not work. But the 10-month-old has had some improvement using Epidiolex, a cannabis based product. His mother Lauren Abernethy and partner James, are now behind a campaign to allow doctors to prescribe full extract cannabis oil. Nethaniel had been perfectly healthy until he was three months old when he had a seizure that forced doctors to put him in an induced coma.
He came around two days later but his condition deteriorated and he was diagnosed with a the genetic disorder mitochondrial which causes the seizures. Nathaniel was kept in hospital over the next three months while he underwent tests. His mum told the Liverpool Echo: “We have been denied the medication even though Nathaniel has shown some positive effects to the Epidiolex therefore the full extract could be the lifeline we need. “The future prognosis for Nathaniel is not good and he currently has a short life expectancy. Because of his condition being genetic, he is likely to be the only child I have.
“We believe that this oil could give us longer with him, whilst giving him and us a better quality of life. “I am not naive; I know it is not a cure but I don’t like the fact that I am being denied the chance to try it. “There are children out there that have been given this and they are thriving.” With the support of the End our Pain campaign group, Lauren and James, alongside 15 other families will meet with MPs at Westminster, on March 19. Lauren told of how he had been fine for the first few months of his life. She said: “He had perfect head control, he was engaging, fixing, following, grasping, everything he should have have been doing. “He was smiling and laughing and had just started to try and roll over and then the first seizure happened when he was 14 weeks old.
“It is heartbreaking because not only does he have this condition but he has lost the skills he did have. “He doesn’t smile anymore, he can’t feed normally and is fed through a tube.” Lauren said how he is often affected by seizures when he is trying to fall asleep. She continued: “He will continuously twitch and jerk which are known as myoclonic jerks. “It pains me to say I think he may be having up to 100 a day of these. “As well as this, Nathaniel can’t fall asleep without being medicated but when he is trying to fall asleep and he is relaxed he will have what is known as focal seizures.
“His body will stiffen and his head will flop to one side and his face will become contorted. “His breathing is also affected by these type of seizures, which he can have up to 10 times a day, depending on how quickly his medication takes to work to help him fall asleep. “And then when he is asleep we have to watch him to make sure he is OK as we never know when the next big seizure will hit. “It is very hard on us all as a family.”