Emily commenced seizures during the first few weeks of her life that were very difficult to get under control - some days she would have between 30-40 a day. Over the years these, with the aid of medication are much better controlled. It was obvious very early on that she was not reaching her appropriate milestones. Numerous investigations were carried out, one of which discovered the cortex of her brain was severely damaged.
Since she was 2 years old she has been gastrostomy fed, but unfortunately following her recent scolliosis surgery (June 2016) a rare complication has arisen - her bowel has become compressed against her spine known as an SMA- this has necessitated her now being fed via a GJ tube over 18 hours. Since the end of June, following this problem she has spent 163 days in hospital to date as her anatomy keeps rejecting the GJ tubing.