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Amaaya's Story

Little Amaaya was born with a congential eye disease known as Leber's Congential Amaurosis, which has left the Adelaide 3-year-old in almost complete darkness since birth.

 

With only 10% vision available and colourblind, Amaaya's life will forever be impacted by her condition.

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However there is still hope!

Researchers in Philadelphia is the United States are planning to trial test treatments on mutations caused by the CRB1 gene - the same gene is responsible for Amaaya's condition.This follows successful trial results on the RPE65 gene.

 

In order to be included in the clinical trials, the Amaaya and her father Gagandeep must pay for additional testing to determine her eligibility for the trials. 

 

The young family are furiously trying to save enough money needed to travel to Philadelphia, which will cost them more than $14,000 to apply for the clinical trial, excluding flights and accommodation. 

Once they are able to go there along with Amaaya, her parents will be able to find out the time frame for the trials that may be able to change the young toddler's life.

How We are Involved

Little Heroes Foundation is passionate about supporting seriously ill children in South Australia. Our Founding Chairman Chris McDermott was introduced to Amaaya and her family through Labor MP Blair Boyer. Amaaya and her family are eligible to travel to Philadelphia for clinical tests, to determine whether she will be able to stop the progression of her condition and change her life forever. 

 

As Amaaya is a seriously ill child in SA, we felt compelled to do what we can to help her gain access to the very best care for her condition ... but we need your help!

As passionate as we are, we can't cover all of the costs for this struggling family. Little Heroes Foundation is asking for your help to directly support them by making a donation through this page. All donations received through this page will support Amaaya and her family on their journey to the States, in the hope that she have life-changing surgery.

 

The family need a total of $25,000 to get to Philadelphia to see what can be done about Amaaya's deteriorating eyesight. Any amount will help make a difference to this family, and change the life of this Little Hero!