I am mum to two small children, Izzy (5) and Jake (3). Izzy was diagnosed soon after birth with Pearson Syndrome, an extremely rare and life limiting mitochondrial disorder. This affects her in almost every way – her heart, eyes, muscles, bone marrow, kidney, pancreas, liver and cognitive ability are all impacted, as such it dictates both her and the family’s daily life. We seek both regular and unfortunately on occasion unplanned and urgent, treatment both locally and in the UK.
My experiences of parenting a child with special needs have given me an insight into the myriad of different challenges faced by parents in similar situations. I am hopeful that through the Parent Forum we can provide an effective voice for parents in this situation and help support improvements and changes to current systems that will have a positive impact on families of special needs children.