sloanes story On March 18th, 2010, Neil & Stephanie Pasher welcomed Sloane to their family, which already included twin 2 year-old daughters, Kinleigh & Avery. Within weeks, Sloane was diagnosed with Aicardi Syndrome. Aicardi Syndrome is a disorder that poses severe developmental challenges and often brings on frequent and difficult to treat seizures. Sloane’s challenges include: missing her corpus collosum (the part of the brain that connects the left and the right hemispheres), lacunea on her eyes (holes in her retina) and difficult to treat seizures (up to 60/day). Some of Sloane’s additional challenges are: microophthalmia (small eyes, one of which is so small that it has been replaced with a prosthesis), coloboma (malformation of the retina), scoliosis (curvature of the spine), butterfly vertebrae (disks are in the shape of butterflies) and microcephaly (severely reduced circumference of her cranium).
The Pasher’s lives were dramatically changed from that day forward. The first 2 years of Sloane’s life were a blur. They were not only taking care of Sloane, but twin 2 year old daughters that required a lot of love and attention. They spent many multi-week admissions at the Hospital for Sick Children in the early years with numerous ICU visits and some very close calls during the first 2 years.
The level of stress the family was under was indescribable. The pressures of caring for Sloane, while continuing to provide a healthy and happy home for the twin girls placed an enormous amount of strain and stress on the Pashers and their families, both emotionally and financially. Steph began having health concerns and suffered from anxiety and depression, which got so bad that she was not able to care for Sloane at times. Neil also started to suffer from depression, and although it wasn’t debilitating, he was being followed by a physician and required medical support.
The Pashers always felt like they were well supported by friends and family but still struggled with frequent admissions, weekly specialist appointments, financial & emotional strains. Taking care of a child with a life threatening illness is not easy; it truly requires commitment and sacrifice. There are so many other families and caregivers that are not as fortunate, that either do not have family or friends nearby or are forced to be the single source of care for their child. Time and time again we hear from the families of children like Sloane, that all they need is a break from caring for their child. It was through these conversations that their dream to open a pediatric respite care centre in Durham Region began.
Caregivers need the ability to step away and have a break. That is what this facility is all about; giving the caregiver a break, while ensuring the child is in a safe & loving place.