Help Coady get lifesaving treatment

Imagine being unable to eat anything at all, without excruciating pain, cyclic vomiting and debilitating nausea. This has been Coady’s reality for 5 years. Then, imagine you have consulted every medical speciality and you have been gaslit, told your symptoms are all psychological and abandoned by the very medical system that should offer answers and support.

Coady is a 21-year-old University student who has multiple rare syndromes that have hijacked her future and compromised her ability to lead a normal life. Coady has multiple,  extremely rare, abdominal vascular syndromes, including MALS, which she had surgery for in January of this year. This provided some relief, but over time her other conditions have worsened, debilitating her daily life.

 

At present, due to a paralysed stomach her nourishment comes from a feeding tube inserted through her abdomen, as her frail body rejects any attempts to eat normally. She further requires weekly fluids through a central line to stabilise her heart and blood pressure due to a condition known as Postural Orthostatic Tachycardia Syndrome. This is a condition that causes extremely high heart rates, and often leads to her collapsing.

 

Coady was further diagnosed with a connective tissue disorder known as Ehlers Danlos syndrome, which is a large component and likely cause of her other illnesses. This makes treatment more complicated, and dangerous due to the fragility of connective tissues in her body, essentially the 'glue' that helps all of your organs function properly. Unfortunately, this disease and its large scale impacts on the body and its functioning is not well understood in Australia, and would require specialist care that can only be provided in the US.

 

We connected with Coady several months ago, because our daughter suffered from the same rare syndromes and was forced to travel to the USA for surgery. Coady needs that same treatment to help her reclaim her life. That medical expertise lies with a rare vascular diseases Surgeon in the USA.

 

Coady is intelligent, articulate and incredibly resilient. More than anything she desperately wants to be well and as hard as it is to ask anyone for anything, crowdfunding is the only way she can access this expensive life-saving treatment.

 

This could be your daughter.  It was mine, so I have been moved by Coady’s resilience and strength in navigating an often hostile and dismissive medical system, whilst battling chronic pain. Coady lives alone and has very little support and so we are taking this step to respectfully reach out to you all in the hope that you might be willing to help Coady raise the necessary funds to get the diagnostic workup and treatment she needs in the USA.

 

Thank you so very much.