There was one thing we knew with absolute certainty. Lying on a hospital bed, looking at the tiny wrinkled human who could barely pop open her eyes, we knew without any doubt that life was unlikely to give us anything that'd surpass the joy we felt then.
There was this tiny person a little bit of us and a whole lot of a completely different person we couldn't wait to get to know. Aadya Kiran. First Ray.
Right after Aadya turned 1, she stopped putting on weight. At 2, she started showing signs of regression and losing skills she previously had. It took us over a year and a half to find out an answer, a medical diagnosis we had never heard of before and we'd have never imagined - a rare neurodegenerative mitochondrial disease called Leigh's Syndrome, that has no known cure.
At 28 months today, Aadya can chat your ears off and boss you around to get exactly what she wants. Depending on the time of the day, she can be a gracious queen or a tempestuous tyrant. She can be a little slow in verbalizing her thank you’s in front of you. And then be endlessly grateful every time she sees the gift you brought her. Each gift is renamed to ensure the gift giver is never forgotten. Her car is Ms Heather Car. Her bath toy is Sudha Aunty Piggy.
Today, there is also a lot that she cannot do. After a bout of flu earlier this year, she cannot stand or walk or sit unsupported or crawl. Head tremors make routine tasks like using a straw to drink fraught with difficulty. Running on lower energy than what she needs to get through her day, even a simple cold can be disastrous for her. She recently had a surgery to place a feeding tube to help meet her heightened need for energy. She has braces for her feet, compression vest for her torso and a gait trainer on the way to help her be mobile. She sees more specialists than there are days in a week, is more comfortable in a hospital than a playground and has been prodded and poked and examined more in her short life than most adults have in their entire life.
Even with the disease impacting almost all major organs (brain, heart, lungs, and kidney to name just a few), on a daily basis these kids get up, get out of bed and then proceed to prove medical literature and Doctors wrong. This is why, most families call them warriors or fighters. The more we see the devastating effects of the disease on Aadya and the other mito warriors, the more we realize that we cannot let our kids fight this alone. We owe it to them to give it our best shot; our best shot to help them not just survive this condition, but to beat it and thrive.
We’re thankful for the efforts by the CureSURF1 families in advocating for not just their kids but all kids who have similar diseases. This organization and their work in putting together a research at UT SouthWestern is the most hope we’ve had in a long time. We’ are joining them in their efforts to bring this to fruition. The road to this clinical trial, like all other research projects, will be long. We hope you’ll join us on this journey.