Sue Williames
Sue Williames's Fundraiser

In memory of Nessa's life, let's take the unknown out of INAD

More funding is needed for research into INAD

$9,184 towards $10,000

Started 23rd November 2018
Donations are in US dollars

UPDATE: Nessa passed away on Friday 5th February, 2021. She was at home when she went and now flies free in the heavens. She was 17, and would have turned 18 in April. This is much older than kids with the classic form of INAD who usually pass away before the age of 10. We need to keep chipping away at finding a cure to this dreadful, insidious disease that robs our children of so much during their life, and eventually takes life away altogether.

Thank you for any donation you might make, no matter how small or large. Note that donation amounts you choose are in US dollars not Australian dollars.

No parent should suffer the pain of losing a child from this disease. Goodbye my darling, fly free.

Dear friends, family and others who care,

Nessa is 16 and her life is being taken from her...

Up until the middle of last year we had no answers as to why Nessa's physical and mental abilities have been deteriorating progressively since about the age of 3. It was agonising going through year after year of invasive and extensive testing with no diagnosis, and at the same time, watching the unrelenting decline in her abilities and health.

But after having her complete set of genes (full genome) sequenced last year, we have finally, but sadly, found out she has a disorder called infantile neuroaxonal dystrophy (INAD). This is an extremely rare genetic disorder affecting the nerve axons, which are responsible for conducting messages in the brain and other parts of the body, causing a progressive loss of vision, and physical and mental skills.

As INAD is so rare you've probably never heard of it before. The symptoms of INAD usually start to appear in early childhood. A common pattern in young children is loss of previously acquired skills, mental and physical ability and progression of the disease over time. The progression of INAD is usually rapid after the initial onset of symptoms. Many affected children never learn to walk or lose this ability shortly after learning it. During the last stages of the disease, severe tight or stiff muscles, progressive cognitive decline and problems with vision have a large impact on daily life. Unfortunately, many children with INAD do not live beyond age 10. Some children survive into their teens or later ages and usually have an even less common Atypical form of INAD, which is what Nessa has. From our little girl running on the beach, to now at 16, Nessa is blind, has lost the use of all her limbs and body, cannot eat and can barely speak.

Currently, there is no cure for INAD. And being that INAD is a very rare disease, there is little funding for research. But that shouldn't mean that the families impacted by INAD can't have hope. It just means that we all have to come together to help to raise money for research into a possible cure.

I have decided to fundraise for the U.S. based INADcure Foundation as there isn't any equivalent organisation in Australia. Thanks to the efforts of some determined and caring individuals, the INADcure Foundation has been formed as a non-profit organisation dedicated exclusively to INAD community. Dealing with this devastating disease is very stressful and Nessa's and other children's lives depend on raising money for a cure. Please note that donations made are in US dollars and non tax deductible for Australians.

Thank you for reading our fundraising page and please consider making a donation to help us reach our goal. Your support (of even a small amount) will truly make a difference in the lives of the families impacted by INAD.

A free spirit - aged 3 If you want to know more go to the INADcure Foundation website:

Or look us up on Facebook at: Nessa's life with atypical INAD Facebook page