Lola Jayne Clatworthy



Our little Lola has been battling with seizures from the age of just three months.

Words cannot express the pain and trauma that our family has experienced over the last ten months as we’ve watched her brain struggling to cope with up to 100 seizures a day. 

These episodes come in different forms, the most common being the muscle ‘twitches’ that can last up to 20 seconds. But these can quickly escalate into tonic-clonic seizures that require emergency medication to help break the cycle or admission to hospital. She has stopped breathing and come very close to requiring intensive care treatment on two occasions. She also has absence seizures, where she will zone out. All we know is that it is too much for one little body to have to deal with on a daily basis. They truly are relentless for her. 






As much as she is a little fighter, this heavy seizure burden has had a huge affect on her development. She’s now over 1 year old, but she cannot hold her head up, she cannot hold things or move her body as she wants to. She has a visual impairment and it can be difficult to get her to focus on things. Eating and drinking is very difficult for her. Some days the seizures don’t allow her to go to sleep so she is tired and cranky. But despite all this she gives us the occasional smile which tells us she is in there trying to get out and we just have to help her.

Our priority at the moment is trying to stop or even just reduce the number of seizures she has each day. So far we have tried 3 anti-epilepsy drugs and the ketogenic diet. The drugs have not helped at all. The diet has helped a little in terms of the frequency of hospital admissions, but the effects seems to be wearing off. Now our only plan from the NHS consultants will be to work our way through the list of 20 different epilepsy drugs that might help (but the chances get smaller with each drug), and possibly consider brain surgery. 

We are convinced that Lola’s healing and future wellbeing lies in natural remedies, not medication, and we do know she doesn’t have the time or energy to try all the different drugs that will be prescribed by the NHS in the coming months and years. 

We’re now exploring several specialist remedy treatments, including homeopathy, the Scotson breathing technique and potentially medical cannabis oil. Although recently legalised, medical cannabis is only available to children with two different genetic conditions, neither of which Lola has. She has no diagnosis, so the chances of us being able to access this drug is extremely low. 

During our research and connecting with other parents we have learnt that there is a handful of parents travelling to Holland every month to get a high strength CBD oil for their children, costing approximately £1,500 a month to keep their children alive. While we are not at this stage yet, we want to be prepared in case we do need to go down that route. 

We are fortunate that we have had the ability to afford everything we have needed to pay for Lola to help her up til now, but we have no idea what the future holds for her.

We are eternally grateful for any donations that you can spare and with your help we will provide Lola with the life that she deserves.

We wanted to start this fund so instead of birthday or Christmas presents for the girls, you can make a contribution to this fund.  We will be using our own funds first and only resorting to using this fund when we have exhausted our own resources. Any of the funds raised that we don’t use for Lola’s treatment will go to a charity that helps children with untreatable epilepsy, that is having a devastating affect on young lives all over the world. 

Thank you,

Adam, Jess, Daisy and Lola x