Aria is in a race against time.
This ray of sunshine is in a race against her genetic mutation LONP1. Aria was born with a de novo mutation in the LONP1 Gene which gives her life limiting mitochondrial disease. You might have heard of rare disease, even ultra rare, Aria’s disease is unique in the world!
This is life and death for Aria.
People say to us she looks so well and healthy and perhaps do not understand the urgency of our appeal.
Appearances can be deceiving. Aria walks a tight rope metabolically every moment of every day. The prognosis is very bleak without your support. Her disease is going to shut down organs one by one, without us finding a cure. Your support will fund directly those research programmes tailored specifically to help her. She is what’s called N=1, a unique disease patient who needs a unique treatment tailored just for her.
We are just two parents looking to save our baby. We can do it if you help.
Help us find a treatment
Help us today by donating to our research fund for Aria. We need to work with the worlds brightest minds to discover potential breakthrough therapies for Aria. We want to commence drug repurposing research and gene therapy. We need your help desperately. Please donate what you can.
Your donations are eligible for Gift Aid as we have teamed up with the UK Registered Charity Just4Children ( RCN 1164473 )
There are 10,000+ rare diseases.
Rare diseases are a leading cause of infant mortality.
95% of rare diseases have no treatment
75% of people with rare diseases are children.
30% of affected children never reach their 5th birthday.
Every 30 minutes a child is born who will develop a mitochondrial disorder by age 10.
As part of a group of Mitochondrial diseases we expect that our research findings into LONP1 and treatment discovery will have implications for many other Mito sufferers.
“Aria is one in 8 billion, help us give her a future”
—Aria’s Mum-
Thanks for your donation. It means the world to us .
T