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Aashi was born on June 13th, 2012. Aashi means "smile". And true to her name, she filled our lives with smiles from the day she was born. She was a super energetic kid who met her milestones as a toddler. She was a runner, jumper, climber with tons of energy. Her little jumps on the sofa, her tiny voice full of happiness, her ability to win everyone's heart, defined the true meaning of life for us. She loved going to her swimming class, playing with her friends and family members and going to the park. She was a social butterfly and loved to say hi to everyone.
We are proud of many things in our life, but nothing beat being parents of our little angel. We felt blessed having a daughter who gave meaning to our lives and brought us pure joy. Like any parent, we looked forward to Aashi growing into a successful, exuberant adult.
Around age three and a half, Aashi started wiggling a little while walking. This raised our concerns, which lead us to search for answers to the root cause. Within a few months, Aashi started having seizures. Initially, we were advised that Epilepsy was the cause. As time passed, we noticed that her speech and her cognitive levels also declined along with her motor skills. We feared something else more serious might be happening. As it turns out, that was the case.
At age four and a half years, after almost a year of consulting with various doctors and specialist, we received the diagnosis that she had Batten disease, a rare neurodegenerative disorder that usually begins in childhood causing seizures, vison loss, cognitive impairment and early childhood death. Our heart sank, our life changed. We were told there was no cure, no hope. Life and dreams were shattered the very moment we discovered what Batten disease could do to a child.
We pulled ourselves together, however, and decided to do something about this devastating disease. We are committed to doing everything possible to help find a cure to beat Batten!!! Help us make this happen for Aashi and other children around the world. Our mission is to help find a cure for Batten disease. We want to do our part and raise enough funding to research and start a clinical trial specifically to halt degeneration in children facing Aashi's type of Batten (CLN7).
There is no cure yet for Aashi's type of Batten (CLN7). However, Gene therapy trial has been done on other type of Batten (CLN6) already and have shown success. Gene therapy now offers a path to a cure. Our hope is that our efforts will not only help find cure for Batten disease as a whole, but also help combat additional rare diseases.
A gene therapy approach costs roughly $4 million and includes the initial pre-clinical research phase (mouse models and safety studies), production of the gene-therapy vector, toxicity study, the design and launch of the clinical trial itself. Our goal is to fund research that will help not only Aashi and other children facing her diagnosis, but will also lead to discoveries that could help cure other diseases. A path to a cure is in sight. We have $2M committed, however we have to raise an additional $1M ASAP to pay for the drug to keep our efforts going. For more information and to donate and to see a video about our efforts please visit www.beatbatten.org. You can also get more information via email: Aashishopefoundation@gmail.com,
With Hope and determination,
Rishi & Hemaxi Patel (Aashi's Parents)