Rachael Ralston has a condition called Ehlers Danlos Syndrome, a connective tissue disorder that results in hypermobility in all of her joints, having a systematic effect on her body. There is no cure for Ehlers Danlos Syndrome, you can only manage the symptoms as they arise, but it does shorten your life.
Countless doctors
Rachael lives with her mother Judy, her grandmother and her grandfather who is blind. From birth she was always a sick baby suffering bad reflux to the extent of turning blue whenever she ate or drank anything and she wasn’t able to crawl or walk until she was two and a half years of age. At the age of three Rachael had her first broken bone after falling from a slide, she had no coordination and couldn’t even catch a ball or ride a bike with training wheels. Rachael’s mum Judy took her to countless doctors but they always reassured her that Rachael was okay.
Rachael’s first real memory of knowing something wasn’t right was when she was in PMH after breaking her arm. The hospital called in child services who immediately took her mum away from her into a private room for questioning because she also covered in bruises from having no coordination.
Thanks to Variety their lives changed
By the age of eight, Rachael was unable to walk properly and was in constant pain. Judy and Rachael both weren’t sleeping and knew they had to do something about it. Their GP referred them to a Rheumatologist where he diagnosed Rachael’s condition within minutes.
Ehlers Danlos Syndrome does not only affect Rachael physically but also emotionally and financially. Rachael will never be able to hold down a job, go to university, drive a car, marry, have children or live a long life.
Rachael believes she was given Ehlers Danlos Syndrome for a reason, she enjoys speaking at school and corporate events to bring awareness of her condition, in hope that one day there will be a cure.
Judy was struggling financially, but thanks to Variety their lives changed. Since 2014 Variety WA has granted Rachael home modifications, an electric wheelchair and most recently a wheelchair modified vehicle.
Rachael no longer has to stay at home when her family goes out, they can now all comfortably fit in the car, and Judy no longer has to push Rachael in the wheelchair. The home modifications give Rachael the independence to cook her own meals and the modified vehicle is fitted with anchorage points and an electronic ramp which will eliminate any risk of injury to caregivers as they will not be required to lift the chair. Rachael now participates in community events and loves to go shopping with her friends, making her feel more independent and accepted by the community.
“Variety has helped us to be able to get the equipment that I need without adding more financial stress to our lives. They have allowed me to live a more normal life. They have been so kind and helped us a lot”
Rachael Ralston