Ryan and Jenny Bragg wrote -
We are terrified about what the future holds for our beloved daughter, Clara. Clara is 2 1/2 years old and is such a bright and energetic spirit, constantly trying to keep up with her older brother whom she adores. She is such a bright light in our lives, and her feisty yet friendly demeanor wins over everyone she encounters.
A year ago Clara began to plateau developmentally, causing us great concern. She has always struggled with being stable enough to walk independently and lost the few words she ever spoke. After chasing a diagnosis for an entire year, we finally received heartbreaking news no parent could ever prepare to hear.
In August 2016, we were told that Clara has a terminal neurological condition called Late Infantile GM1 Gangliosidosis. This disease will slowly take her abilities away and cause seizures, blindness, deafness, and the inability to eat and move. We are devastated over the grim diagnosis for our beautiful girl. Without treatment our worst fears will be realized as we will slowly watch our daughter fade away, ultimately ending her precious life far before her time.
There is no treatment or cure yet, but there is concrete reason for hope. Decades of medical research has led the world’s two leading GM1 researchers to the cusp of a potential cure already proven effective in animal trials. A human gene therapy trial could start in 2017 that could save Clara’s life, as well as other children suffering from this terrible disease.
Ultimately, funding is the greatest obstacle between Clara and this potentially lifesaving treatment. A significant amount of money has already been raised by families affected by this disease and the Cure GM1 Foundation was created with the sole purpose of funding this research and trial. Our family has set a goal to raise $500k for the Cure GM1 Foundation to help make this trial a reality. We are asking you to consider donating whatever your heart and means allow to help us reach our goal. All donations go straight to the foundation and are 100% tax deductible.
Every donation will help us inch closer to Clara getting into the gene therapy trial before it’s too late. We are forever grateful for your support to help keep our precious girl here with us living a happy life.
With heartfelt thanks,
Jenny & Ryan
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National Institute of Health: https://ghr.nlm.nih.gov/condition/gm1-gangliosidosis
Cure GM1 Foundation: https://curegm1foundation.org/