The story of Lindsay
2020 was without a doubt the strangest year of our lives. Covid 19 took a hold of the world and tipped our lives upside down. Everyone working towards a common goal – vaccinate against Covid, stop people dying, save the NHS. But for our family 2020 was so much more than Covid 19, 2020 was the year our second child received a diagnosis of SLC6A1. How can this be? we both tested negative! How can this happen to our family again? A sadness that cannot even be described in words. 100’s of seizures a day, head injuries, lost teeth, developmental delay, muscle weakness, learning disabilities, autism, challenging behaviour, need for constant supervision, lowered immunity, cyclical herpes simplex, and untold medications – these are the things we tackle daily and it is exhausting. Behind every ‘i’m fine’ is a sadness, behind every smile is despair, alongside our joy at seeing you and your wonderful children, is pure grief at all the things our children cannot do and may never do, a grief for the freedom you have to relax and let them just play outside around you, while we are on full alert every minute we are with ours. All our hopes pinned on amazing research that started in 2019 to cure our children’s condition, and to repurpose drugs that might be more effective than the cocktail they currently take suddenly put on hold as all the labs were shut down, the knockout mice dead, progress halted by Covid 19 and our babies brains continuing to be damaged by this horrible neurological disease. We are blessed by our childrens’ happiness and the progress they make every day, they are wonderful, they are a joy and we are so proud of them both, but that doesn’t take away our daily pain, and it doesn’t take away theirs.