FIVE seizures a day are just one of the symptoms a Cinnamon Brow mum has to manage for her disabled daughter, who has an extremely rare brain disorder and epilepsy.
Six-year-old Mia Loudon was diagnosed with epilepsy aged two weeks and used to suffer from 15 to 20 fits each day. She had to have her stomach sewn aged two because each seizure led to her vomiting and choking, meaning she is now fed through a peg in her abdomen. She was fitted with a nerve stimulator, at the age of three Mum Paula, of Perth Close, said: “Mia has good and bad days and all of them are very different. She needs 24-hour care because epilepsy is so unpredictable.
“Having Mia’s stomach sewn was a big decision as we knew we’d never be able to feed her again. It was so sad because she used to really like eating.” To add to an already complex condition Mia, who goes to Fox Wood School, in Birchwood, also has CDKL5, which is associated with Rett syndrome, a disorder affecting mainly girls and women.
Although present at birth Rett usually goes undetected until regression occurs at about 12 months and children lose acquired skills. Those with Rett have profound physical and learning disabilities and are totally reliant on others for support throughout their lives.
Paula, who is married to 41-year-old Rob, added: “Not much was known about CDKL5 when Mia was diagnosed in 2005.
“She was only the second child in this country to have it and the 17th in the world. Having this makes the epilepsy very hard to control.”
Paula, who had to give up her job as a PA to take care of Mia, has another daughter Amy, aged nine, who has proved invaluable in helping take care of her little sister. Paula said: “Amy idolises Mia and can deal with a seizure. She has seen thousands of them but it’s awful to see her cry when Mia has a particularly disturbing one.”
The 35-year-old has built up a support network for dealing with CDLK5 which can be found by typing the condition into Yahoo.