Warrior of the Week

Introducing our beautiful #Warrioroftheweek No:5 Tiahna 😍

Our daughter Tiahna was just 6 weeks old when she had her first noticable seizure, me and her dad rushed to A&E, terrified at what was happening to our little girl. Tiahna was kept in hospital and had an EEG, lumbar puncture and blood tests. At this point her EEG was clear and she was diagnosed with myoclonic epilepsy and put on Epilim. We struggled to control the seizures and when she was 5 months old the seizures changed to infantile spasms which I had luckily already read up on, so we took her straight to the hospital and within an hour she had another EEG which then showed hypsarrhythmia. She was started on prednisolone, this didnt stop the spasms so we moved onto vigabatrin, followed by a cocktail of other drugs which all failed to stop the spasms. Just before Tiahna’s first birthday we got a diagnosis of CDKL5 disorder after the epilepsy gene panel testing, this explained the hard to control seizures. Tiahna is now 2, she will be 3 in august and is very developmentally delayed. She cannot sit unaided and has poor head control, she is also tube fed and her seizures are still uncontrolled but despite all this Tiahna is a happy little girl who enjoys school and she is our little superstar 😀Tiahna

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