Sienna’s Story

A photograph of Sienna, a little girl suffering from Landau Kleffner Syndrome, pictured sitting in a restaurant, smiling in a blue dress with a red headband holding back her hair.Like most six-year-olds, Sienna is a kind, caring, lovely little girl. She attends Lawley Primary School where she has always done well as a bright and confident pupil.

In July last year, her parents noticed something was wrong, thinking Sienna had problems with her hearing. By August, their little girl was complaining of very bad headaches, so they took her to see their GP who advised them to give her junior paracetamol.

By the following month Sienna’s condition started to deteriorate, so much so that her school teachers also noticed that she wasn’t her usual happy, bubbly self. She began to display difficulty with pronouncing words, and forgot what she had learnt.

Her parents took her back to the doctors again, time after time, but they would not investigate what was wrong with her. However, her parent’s intuition told them that something wasn’t right and the school agreed that Sienna must have a medical problem.

By the end of November Sienna became much worse, as she was unable to process anything anybody said to her. She couldn’t talk. She couldn’t tell her parents what she wanted for dinner. She didn’t understand her nightly bedtime story. She couldn’t play with her friends. In short, she could do and say nothing!

As a family, it was a deeply upsetting and scary time. Their beautiful little girl had vanished right in front of them over a matter of five months.

The doctors said it could be a multitude of things, including a brain tumour. Her parents realised that obtaining a definite diagnosis was vitally important, and they needed to get it fast.

Sienna underwent several tests, including an MRI scan and an EEG, and was diagnosed with focal epilepsy. Although she was prescribed medication, after the first week her condition didn’t improve – in fact, her parents noticed her getting worse.

A consultant arranged for Sienna to undertake a sleep deprivation EEG, and she was then admitted to Alderhey Children’s Hospital. Her parents finally received a proper diagnosis, and it was heart-breaking.

Sienna was suffering from a rare form of epilepsy called Landau-Kleffner Syndrome. The condition is extremely rare, so much so that there has been little research on it – not just in the UK, but throughout the world. However, what is known is that it occurs in children, usually between the ages of three and nine years, and is characterised by loss of language skills, and silent electrical seizures during sleep. Those children with the condition can suffer convulsive seizures, and additional difficulties with behaviour, social interaction, motor skills, and learning. If left untreated, the child will lose their ability to talk and their language skills, ultimately leaving them trapped in their own body.

In December 2019 Sienna was admitted to Alderhey Children’s Hospital, where the family spent the majority of Christmas. The consultants were confident that the medication they had prescribed would treat the condition.

A photograph of Sienna, a little girl suffering from Landau Kleffner Syndrome, pictured in a hospital bed.However, the worst was confirmed following an appointment in January. The treatment wasn’t working, and during the following weeks, as Sienna was weaned off the steroids, she began to lose her speech. For any parent to see their child like that was truly devastating.

The hospital provided Sienna’s parents with the option of surgery, but it wasn’t guaranteed to work, and there was a possibility that it could leave their little girl paralysed on her left side.

Not knowing what to do, Sienna’s parents began their own research. They discovered Epidyolex and Bedrolite, named as miracle drugs that have been proved to help those suffering from rare forms of epilepsy. Unfortunately, they are yet to be prescribed in the UK on the NHS.

Undeterred, her parents located a private hospital in London – but sadly, they were not taking on new patients, due to the demand being so high in the UK. Their only option was to take Sienna to a private facility in Holland where she could receive the life saving medication, and allow her to live a normal life like any other little girl.

So the family and their friends began to fund-raise, but due to the pandemic it had to be postponed, which meant they were unable to undertake the journey.

In April a miracle happened – a private consultant from London advised the family that they could help, and Sienna began her treatment. She was prescribed Bedrolite and Bedica oil, which she will have to take for the rest of her life. Within four to six weeks, the family noticed a huge improvement with her speech, and she could once again understand spoken language.

The medication is proving successful. Although she still has bad days, these are fewer than before as the treatment continues to work. The family takes each day as it comes.

Due to the medication being unavailable on the NHS, the family must fund it themselves, which is very expensive. Without the medication, Sienna’s condition and standard of life will deteriorate and she will lose both her ability to speak and her language skills.

The family know first-hand how difficult it is to obtain the treatment in the UK, and they are also aware of the miraculous effect it can have. They hope to be able to assist others who require the treatment, so it is available on the NHS, which will make a massive difference to the children who desperately need it.

Sienna asked her parents to promise that they will make her better, and with your help and support, they will be nearer to keeping their promise to their little girl.

In September 2020, in partnership with the Lawley Running Club and Bournville Stewardship Services, we ran the Get Active for Sienna event, helping to raise money by asking people to do 30 minutes of exercise.

While that event is now closed, you can still make a personal donation to Sienna’s GoFundMe campaign.