Hi, I’m Lyndsey, and this is my blog about my family’s life with AHC! I thought I’d use this first post to introduce myself, so here goes. I’m a teacher from Yorkshire with 2year old identical twins (Ruby and Sophia) who both have AHC. Looking back, I know that we saw some symptoms from birth in the form of strange eye movements and curving into a stiff ‘C’ shape at times, but they didn’t experience visible seizures from birth like many children with AHC do, and our doctors weren’t concerned. We, therefore, had a ‘normal’ life adjusting to the crazy whirlwind of newborn twins until the girls were 5 months. At that point, during a family holiday near Scarborough, we rang an ambulance for Ruby during what I now know to have been her first severe and prolonged attack of dystonia. What followed was a barrage of tests, medications, and 999 calls, as she was blue-lighted to the hospital again and again over the next few weeks. During this time, Sophia also began to have dystonic symptoms, and both girls started to have sudden episodes of respiratory arrest.
We ended up living in hospital for 8 weeks in the summer of 2019, while doctors worked to keep the girls safe and get us a diagnosis – and then get their symptoms under control enough for us to be discharged. I’m sure I’ll write about aspects of all this in more detail at some point, but that’s a brief summary!! Since our discharge, we have learned to live with AHC as well as we can. Some days are really hard, but we are able to lead a far more ‘normal’ life than I had expected. I found the support of the AHC community so helpful after our diagnosis and I’m hoping that by writing about our experiences, I can help other families in return. Feel free to get in touch and ask questions / leave a comment & I’ll do my best to answer them!
If you liked our personal journey, please leave us a comment/message of support as we would like to hear from you. Many thanks