Our son, Jack, has Sotos Syndrome*, a very rare genetic syndrome. One of the frightening aspects of his condition has been the associated epilepsy. Several times we have been distraught to find him fitting in his bed in the morning, having no idea it was happening in the night. It's made us get up religiously throughout the night to check on him whenever he is unwell, and nervous when going into his bedroom every morning in case we find him fitting.
"To be completely unaware of when your child is in danger is an awful feeling"
A friend told us about The Daisy Garland charity, and we have been so very lucky to be granted a night-time seizure monitor for Jack. Knowing that we can all sleep peacefully, greet him happily in the morning, and act fast when we need to, is something we can't thank you enough for. No doubt this monitor is going to significantly change our lives for the better.
* Sotos syndrome is a disorder characterized by a distinctive facial appearance, overgrowth in childhood, and learning disabilities or delayed development of mental and movement abilities. Seizure activity can also be a feature of this syndrome.  Characteristic facial features include a long, narrow face; a high forehead; flushed (reddened) cheeks; and a small, pointed chin.