Rett Syndrome is a neurological disorder and is not noticeable at birth. Ruby developed normally until 8 months old when she started screaming and vomiting for at least 20 hours a day. At 15 months she lost all skills from talking, feeding herself, walking etc, and at 2.1/2 she was diagnosed.
This condition has 4 stages of regression Ruby is now on stage 3. She has seizures and in December 2016 after a 2 hour seizure Ruby went into anaphylactic shock with rescue meds. In June 2017 Ruby had Peg surgery and developed bad apnoea and was put onto oxygen 24hrs a day.
Ruby has now recently had double pneumonia and spent 6 weeks in hospital. She has now been put on a ventilator bipap to assist her breathing which is affected by severe scoliosis of 95 degrees curve. We have also had to fight to get into school and we have lived in temporary housing for nearly 10 years. We have no hoists and lack of equipment.
Ruby was admitted to hospital in December again with pneumonia. Ruby is wheelchair bound and non verbal. Her brittle bone disease has impacted on her ability to access physiotherapy as her leg was broken putting on a shoe. Ruby's condition is life limiting and makes her life extremely difficult with many severe medical needs.