We'd like to introduce you to our daughter, Aadya. She is a two and a half year old tyrant who will chat your ears off until she gets exactly what she wants. She is also a little girl with a terrible medical diagnosis. After a long diagnostic journey, earlier this year, we learnt that our daughter has a rare genetic neurodegenerative mitochondrial disease called Leigh's Syndrome that has no known cure. What this means is that the disease is caused by a defect in her genes, affects all her major organs - especially the brain and nervous system and gets progressively worse with time. Doctors try to treat the symptoms rather than the disease itself. While it is often times deemed fatal, today, there is more information on kids surviving to their teens and beyond.
For a child who met all her milestones and seemed to have a typical first year, Aadya presents a completely different picture today. Crawl. Sit-up. Stand / walk with support. Drink from a straw. These are all things she could once do with ease. These are all things she can no longer do. And these are all things we hope she will one day be able to do again. To this end, we've three goals that we hope this campaign can help us meet.
Our first and most important goal is to help raise funds for a research study. The more we see the devastating effects of the disease on Aadya and other kids like her, the more we realize that just waiting for someone to rally around to one day find a cure for this disease is not something we can do. We owe it to Aadya and all kids like her to give it our best shot to help them not just manage this disease, but to beat it and thrive. Today more than ever before, there is hope for a gene therapy based cure. So, 100% of funds collected will be given to researchers currently working on finding a cure for this disease. The research we're hoping to contribute to is slated to start in the University of Texas South Western located at Dallas, Texas. The research will be headed by Dr Berge Minassia and Dr Steven Gray .
When we first started on the diagnostic journey, there was no one we knew who had seen something similar. So, our second goal is to add our voice to the voices of advocacy and awareness. This campaign is just a first step. For more information, please follow Aadya's story on Aadya's Story
We have one final hope, as well. A hope that we aren't leaving a single stone unturned. Who is to say that faith or prayer cannot move mountains. So, maybe you say an extra prayer for Aadya(if you believe) or send her positive vibes(if you don't). We'll take all the faith and prayers that come our way.