We are terrified about what the future holds for our beloved daughter, Clara. Clara is 3 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.
At 1 year old 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 too early.
There is no treatment or cure yet, but there are several potential therapies being researched right now that are showing very positive signs in the lab and may be brought to a clinical trial soon. The Cure GM1 Foundation was created for the sole purpose of funding this type of research and helping make a treatment and cure a reality one day, so that other parents don’t have to endure the journey we are currently on to save our child’s life. Our family is raising money for the Cure GM1 Foundation and are asking you to consider donating whatever your heart and means may allow to help us support ending this terrible disease forever. All donations go straight to the foundation and are 100% tax deductible.
We are forever grateful for your support to help develop a treatment to save Clara and all children suffering from this terrible disease.