Our August warrior is Tia, whose story has been written by her mum Chloe
Tia started displaying “strange” movements around October 2019 when she was 3 months old. We took her up to the local A&E where they said it was reflux. I knew something wasn’t quite right and kept taking her back numerous times (they kept saying the same – reflux!). In January 2020 they admitted Tia into hospital and they were questioning if she had cancer and many other things. She had an MRI, EEG, and lumbar puncture done. The EEG came back showing she had infantile spasms. By this point she had regressed so much that she couldn’t even hold her head up. They started her on a medication called vigabatrin which helped for 24 hours and then the spasms came back. They then put her on epilim and discharged her as she wasn’t as bad. In November 2020 I noticed Tia’s seizures were getting worse. She had already tried another two medications and the seizures were changing, she was having these cluster seizures lasting for seven hours plus. In January 2021 the hospital admitted Tia again and did another EEG and MRI. The results showed that she now has complex epilepsy. Tia has four types of seizures; tonic clonic seizures, absent seizures, myoclonic seizures and infantile spasms. Tia has seizures all day, every day. We are still trying to find a medication to help her however the best medication she has had so far is phenobarbital. Tia is still unable to sit on her own, she can’t walk, and she struggles with rolling. If it is a bad day where she has a lot of seizures she will struggle with her head control. She depends on someone 24/7. Tia earlier this year managed to say her first word which is “hey” . She loves all of her food and that is her favourite time of the day! Since Tia was diagnosed we have raised over £1000 for UKIST and we also raised over £7000 for her to go to a private doctor. Tia is a little warrior and she has a lot of fight left in her! No matter what she always has a smile on her face and I always say as long as she’s happy, I am happy.