“With Soliris, Ashley has a chance at a long life.
We have no certainty for Ashley in the future if Soliris is not government funded.”
Kerri, mother to Ashley, 5, who was diagnosed with aHUS at 6.5 months and is being managed with compassionate supply of Soliris
“Before being diagnosed with the disease, Bianca was a very vivacious and vibrant person.
She was an extremely sociable, energetic kid full of life and compassion.
My only child now has renal failure due to the time wasted by bureaucrats debating whether to provide aHUS patients with access to Soliris.”
Tammy, mother to Bianca, 17, living with aHUS, pleading for her daughter to be granted urgent access to Soliris through the LSDP
“My biggest fear is Mummy dying from aHUS.
So please Tony Abbott can you let Mummy and people with aHUS have Soliris.”
James, 7, whose mother, Deborah is living with aHUS, asking the Federal Health Minister to fund Soliris
“When I’m heading to hospital following a flare, I’m wondering whether I’m going to die this time?
Tracey, 34, police officer living with aHUS rallying the Federal Government for access to Soliris
“Without Soliris, my doctor has informed me that a person can live on a dialysis machine for an average of five years.
That scares the hell out of me.”
Debbie, 52, living with end-stage renal disease caused by aHUS
About the aPSGA
The aHUS Patient Support Group Australia (aPSGA) was established in September, 2012 by Melbourne-based mother-of-five, Kerri Grey, to support Australians living with, or caring for those with the ultra-rare, life-threatening blood disease, atypical Haemolytic Uraemic Syndrome (aHUS).
Kerri’s son, Ashley, was diagnosed with aHUS at six-and-a-half months of age. Following devastating health complications that left Ashley literally on death’s door, he became the first Australian to be granted the only life-saving and genuinely life-transforming treatment, Soliris® (eculizumab) through the manufacturer’s compassionate use scheme. This treatment has restored Ashley to good health and allowed him to live a relatively normal life.
The aPSGA acts on behalf of Australians living with aHUS, their carers’ and families, to:
- Connect those affected by aHUS;
- Provide a network for those directly affected by aHUS through education, knowledge sharing and experience, and community support, both online and offline;
- Raise awareness and understanding of aHUS as an ultra-rare, life-threatening disease;
- Advocate for optimal care for those living aHUS;
- Ultimately secure fully subsidised access to the life-saving treatment Soliris, through the Government’s Life Saving Drugs Program (LSDP).
Get in touch to learn more about the aPSGA.