My name is Mimi, I live in Edinburgh, Scotland with my daughter Rebekah-Mae. Reebie is 23 years old but, her brain stopped developing at the age of 10 so, she’ll always be a 10 year old. She’s been in hospital (Edinburgh Royal Infirmary, ward 231 room 002) since last Friday (June 29th) and discharged yesterday Friday July 3rd. They’re doing tests, monitoring her seizures whilst reducing her medication, keeping her up all night, and flashing lights to trigger the seizures and see which parts of her brain are firing up. 

In November 2025 Reebie received an additional diagnosis of KBG Syndrome (so rare only 200 cases worldwide. https://tinyurl.com/3kp5vwvu, https://tinyurl.com/4f4nyjw2, https://tinyurl.com/3hkcwmp6 This is on top of the PVNH she was diagnosed with back in 2011 when her seizures started which is also rare but thousands of cases) https://tinyurl.com/ymcs8mkv  https://tinyurl.com/2s3cnh3u KBG also causes seizures and now the specialists believe that’s why she gets all types of different seizures which isn’t common at all, most people with epilepsy only have one type of seizures. Reebie’s run the full gamut   

Focal (partial) seizures which start in one specific area of the brain. They are divided into:

Focal aware seizures (formerly simple partial) awareness is preserved but she’ll walk around opening doors, taking off all her clothes.

Focal impaired awareness seizures (formerly complex partial awareness is affected she’s in a daze and totally doesn’t know where she is. 

Focal seizures that evolve to bilateral tonic-clonic seizures.

Generalized seizures – These involve both sides of the brain from the start. Types include:

Absence seizures (brief lapses in awareness)

Tonic seizures (muscle stiffening, hands become claw like and she slowly turns her head to the left looking like the exorcist.)

Clonic seizures (rhythmic jerking, kicking her legs and arms)

Tonic-clonic seizures (stiffening followed by jerking)

Myoclonic seizures (sudden brief jerks)

Atonic seizures (sudden loss of muscle tone where she’ll just drop to the floor, faint and suddenly void)

The kicker is, there is only one other documented case of someone with both PVNH and KBG syndrome Reebie has become a bit of a guinea pig. When the doctors do the rounds in the morning there are about three specialists and 7-8 students peering over Reebie’s monitor and brain activity. It’s absolutely bizarre to watch, like something on one of those medical shows where they’re pointing at things on the monitor and exclaiming in medical jargon. The neurologists asking questions, students gesturing and pointing with glee. Apparently, some of the things inside or missing from Reebie’s brain are only found as diagrams in medical textbooks. I guess it’s pretty exciting and a great learning experience for the students. The neurologists are also pretty bewildered that all this is in an unassuming little girl’s (well woman but always 10-years-old brain.)

I had to sign a consent form for the gawkers to come in and marvel. Reebie’s pretty stoic and taking it in her stride, she just sits there colouring in her MLP and fairy books. She can’t leave the room though. Because of all this and because it’s pretty unprecedented the hospital has approved Coco (her dog) visits which apparently can be done in certain circumstances. This wasn’t meant to be done until August but, they brought it forward because Reebie has become a talking point in the Anne Rowling Regenerative Neurology Clinic and Edinburgh University lecture halls.

My family live in Virginia. and Reebie and I want to go back home. The medical research and treatment options are far superior than those here on the National Health Service and we need to explore those options to help Reebie realize a seizure free life. I pray to our dear Lord Jesus that all your hearts are opened to support this beautiful God fearing woman.

Mimi-Beth

https://www.paypal.me/MimiBeth