Fundraiser created for Portsmouth girl with rare epilepsy condition which has treatment available in the USA

Kaitlyn Butcher, 12, of Fratton, has been diagnosed with rare form of epilepsy which can see her suffer between 50 to 100 seizures within a 24 hour period. The condition is called NPRL3 Medical Resistant Focal Epilepsy and only affects around a 100 people in the world.

While Kaitlyn has had epilepsy since she was two-years-old it has gotten a lot worse since covid, and the new diagnosis means that surgery options available on the NHS are unlikely to work. However, Kaitlyn’s mum, Katie, is now appealing for help after finding a surgery available in the USA which could have a positive impact on her daughter.

The condition is heavily impacting Kaitlyn’s life as she takes 15 tablets a day and needs to always have emergency medicine available at all times. Katie said: “It is stressful but she takes it on the chin and is always smiling and she tries not to let it get to her.

“It does make life a little bit more difficult, we have to fit our life around it. She has to be up at a certain time to be able to eat breakfast as she has to have an hours gap between breakfast and her medications.

“Trying to fit that in before school, holidays, trips to see my parents. We cant just say ‘right, lets go to the beach’, we have a two hour window where we need to make sure meds are done on time and to make sure she doesn't have any reaction to those meds. She is on three different types and they cause nausea and a lot of other things that can make a difference to her day.”

The surgery, LITT (Laser Interstitial Thermal Therapy), is not available on the NHS at the moment as research continues into it. However, as they do not know if or when it will be available, the family have taken matters into their own hands.

She said: “There is a new procedure that has become available in America called LITT surgery. Essentially it is a laser that focusses on the area where the epilepsy is being caused. It is not available on the NHS in the UK at the moment. They are looking at it but we have been told it could be next year or in the next 20 years. There is not a timeframe and nor do we have any idea if she would fit the criteria if it was to be available here.

“We took the decision to start a Crowdfunder because it is roughly about £108,000 in America, and obviously we have to get there. We set the Crowdfunder at £120,000 to try and get there. Her condition has got a lot worse since covid, we also lost her grandmother in 2020 so I think it is an emotional response which has made things worse.

“This is year four, almost five, of trying to manage this. The thought that we could be facing an indefinite amount of years before we can get it on the NHS, I don't want to have to put her through that anymore.”

Katie recently started the Crowdfunder which at the time of writing is at £250. To find further information on Katelyn’s condition and to donate visit: https://www.crowdfunder.co.uk/p/epilepsy-surgery-to-give-kaitlyn-her-life-back.

Katie said: “It’s going to be a long haul but if we can get this Crowdfunder out there and get a bit of fundraising then we might have light at the end of the tunnel.”