Tell us about yourself and the patient in your life:
Megan is 12 years old and lives in Burntisland, Fife, Scotland. She is the happiest, most chilled out little girl I’ve ever known who absolutely loves cuddles especially from her big brother. Despite some very tough days over the last year Megan always has a smile on her face. Megan’s favorite thing to do is watch Peppa Pig, It’s the one sign she uses daily. When Megan has been unwell you alwaya know when she feels better as she starts signing for Peppa.
Megan started seizing around 14 months. She was always delayed in her development and very slow to progress not meeting any milestones.
She never rolled or crawled but started walking unsteadily just over 3 years. She does still walk now but cannot go far so she has a wheelchair. She cannot manage stairs or get herself up from standing.
Megan is non verbal but babbles and uses signs for Peppa, friends, happy and toilet. Although she regularly asks for the toilet it is very sporadic with limited success.
She has always had a severe form of epilepsy failing numerous medications over the years. She has been on the Ketogenic diet for 4 years now and also has a VNS. Megan’s seizures always come in clusters the pattern of which has changed over the years but at present she seizes roughly every 3-4 weeks over a few days then it stops until next time.
Megan uses to be able to feed herself and eat and drink but this has deteriorated significantly, she does not like or enjoy eating and is now fed via a gastrostomy.
Megan’s favorite time of day is bed time, she is so happy at the end of the day when she gets into Mummy’s bed with all her dollies (7 of them) and her blanket for some Peppa time and cuddles.
What is your hope for the future for your loved one:
Megan is such a happy and sociable little girl. It is my dream for the future that better treatment is found for her epilepsy and she becomes seizure free.