Our beautiful 7-year-old boy Jack has recently 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 make this possible, we are now working to raise the funds needed to give him this opportunity.

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 our wish to preserve this for as long as possible.

If you can, we would be deeply grateful for your support. Whether you choose to donate, share this page, or simply send your love to our family, every gesture makes a real difference.

Every contribution, big or small, brings us closer to giving Jack more precious time.

Thank you from the bottom of our hearts for standing with us.

With love,
The Danskin Family