The story of Ava
On the 29/8/18 after a LOT of testing and after many years, we learnt that Ava lives her life with EDS3 (Ehlers-Danlos Syndrome Type III) or hEDS (Hypermobility Ehlers-Danlos Syndrome).Â
EDS is a rare disease which is caused by genetic defects in the bodies collagen (TNXB gene). Collagen being the ‘cement’ that holds people’s bodies together. Ava’s collagen is like wet cement, not fulfilling its purpose of ‘holding’ her body together. From testing, what we know so far r elating to EDS or other associated issues are affecting Ava’s bones, joints, muscles and ligaments, stomach, blood and bowel.
EDS is referred to as an ‘invisible’ physical disability, due to it not being able to be seen from the outside. Ava can have ‘ok to normal’ days and then bad days, where she needs to use a wheelchair part time, with the main goal being to reduce pain and fatigue and conserve further energy. Ava also has Asthma, Allergies and a Lung Disease. Ava has a LOT of people that are required to care, monitor and support her with her disability and other conditions. (Haematologist, Cardiologist, Lung Specialist, Gastroenterologist, Physio, Dietitian, OT, Podiatrist, Paediatrian and Pain Team.
Ava has a beautiful smile, is a great friend with a wicked sense of humour. She is our strong warrior who we love so much.Â