Help with Siennas fight against Landau kleffner

Sienna had always been a healthy bright young girl up until this time. She exceeded in nursery and reception. In September 2019 and year 1 at school siennas condition started to deteriorate and school also picked up on her change of character. She wasnt saying words properly and she seemed to forget what she had learnt. It was like Sienna was trapped in her own body.

We fought with the GP as they didnt investigate after visiting several times but as a mother i knew there was something wrong. The school soon realised that it was medical aswell.

 

Sienna deteriorated rapidly from October to the end of November not being able to process anything anybody said. She couldn't talk, say what she wanted for dinner, have a bedtime story, play with her friends nothing! Her life had massively changed going from a healthy happy 6 year old to this is so so sad.

It was a scary time for us and the rest of the family. We was told by various doctors it could be a number of things including a brain tumour. We had to fight again to get answers quickly.

 

Sienna underwent tests at PRH and had an MRI scan and an EEG at Stoke hospital. She then was diagnosed with focal epilepsy and started medication.

After a week Sienna didnt improve and got worse so we contacted the consultant who then sent Sienna for a sleep deprivation EEG at Stoke hospital. She was then admitted to Alderhey childrens hospital where they later diagnosed her with a rare form of Epilepsy called Landau kleffner syndrome. This is so rare that there is not enough research in the UK or the world to know why it happens and how to beat it with regular medication.

This is a horrible disease that if left untreated can take away siennas speech and language skills forever leaving her trapped in her own body.

Her life has already been massively affected by this and we dont want it to get worse and leave her with life long disabilities.

 

Sienna was admitted to Alder Hey children's hospital in Liverpool in December where we also spent the majority of christmas.

Sienna started with 5 days IV steroids and continued at home with other medication and oral steroids. The consultants believed this would beat it.

 

In January we were back at Alder Hey for results but unfortunately the steroids hadn't fully worked therefore Sienna is being weaned off them.

Now in February, she is being weaned off steroids and because of this she is now starting to lose her speech. They have been told she could lose her speech completely. It is heartbreaking to watch.
Time is against us and the sooner we can get the medication the less chance of this happening.

 

The next step was surgery but as this isnt 100% effective and could leave her paralysed on her left side this isnt an option to them.

 

We have done extensive research and therefore the next step is getting prescribed Epidyolex which cant be prescribed in the UK on the NHS for Siennas condition yet.

We have found out it can be prescribed from a private hospital in London but they arent taking on new patients at the moment due to the demand being so high in the UK. So our only option is to take Sienna to a private facility in Holland.

 

Epidyolex and Bedrolite are said to be miracle drugs its not only proved that it helps other rare epilepsy syndromes but has been proved in other countries that it has helped Siennas condition.

There are many mums in the UK fighting to get these drugs on the NHS but at the moment they also have to source it abroad or privately.

 

As parents we will do anything to get our daughter back to what she was and hopefully lead a normal life, therefore finding funds to take sienna abroad to get this drug is our only option. 

 

We are humbled by the love and support we have received over the past months through this difficult time and are now asking if anyone could help us raise the funds to help go abroad and get this drug and try and beat this horrible disease. 

 

Once we have this drug and evidence it works we can help other moms and dads fight the NHS to prescribe it in the UK. 

 

Sienna has asked her us to promise we will make her better and that's a promise we will try to make with your help ❤