Jack's Journey Charity Auction

For those who dont know last year Jack Danksin has been diagnosed with CLN3 Batten disease, a rare and devastating genetic disorder that affects about 1 in 100,000 live births worldwide.

Batten disease is a progressive neurological disease that robs children of their vision, causes seizures, and leads to a heartbreaking loss of cognitive and motor abilities. As it advances, it brings severe disability and significantly shortens life expectancy. There is currently no cure.

Right now, our hope lies in a promising clinical trial medication that our incredible doctors at The Austin are working to access for Jack. This medication could help slow the progression of the disease and, most importantly, give Jack more time to experience a full and joyful childhood—the opportunity that every child deserves.

Unfortunately, the medication that offers Jack more time comes at a cost of $180,000 per year to his family. After a great outpouring of help from far and wide last year the team are now looking to support the family for year 2 of this treatment.

This is in the form of a Charity soccer game at Perth Soccer club on the 17th of May and a Charity Auction to support this. 

While Jack is aware that his vision has declined over the past year, we want him to embrace and enjoy the purity of life without the weight of knowing the full extent of his diagnosis or what lies ahead. Please respect the family wishes to preserve this for as long as possible.

Whether you choose to take part in this Auction / donate via the go fund me https://www.gofundme.com/f/jacks-second-year-of-medication-for-cln3-batt... ;Any support will assist.

Every contribution, big or small, gives the family and Jack more precious time together.

Thank you from Jacks family and everyone on TEAM JACK!