Ava was diagnosed with ZTTK syndrome in 2019, an extremely rare syndrome that affects all of her organs, especially her brain. ZTTK is a severe multi-system developmental disorder characterised by delayed psycho-motor development and intellectual disability; This in turn causes her to have seizures and breathing difficulties.
The Daisy Garland charity has very kindly provided Ava with a SATs monitor. This will help our family and our anxieties as we are fit to monitor Ava's oxygen levels during the day and night when she has any breathing difficulties that may be related to her seizures. We can't thank The Daisy Garland charity enough; they have effectively given us a chance to prevent the worst-case scenario - and that is why we are so thankful of their support and generosity.