Oct 12, 2020 Latest post:
Oct 23, 2020
Follow Aydriana’s journey as she fights back against Batten Disease(read more below) through an experimental bone marrow transplant being pursued by a team of experts at Duke University. The procedure involves 10 days of intensive chemotherapy, 2 months hospitalization and 3 additional months residing nearby (335 miles from home) as she’s monitored for life threatening complications while her new stem cells engraft. This is all in effort to significantly slow down or halt the disease’ progression so that Aydriana will be able to live a longer and more improved quality of life. The results we hope for are not guaranteed but sometimes, you just have to have faith and jump.
Aydriana (11) was diagnosed with a rare and fatal disease called Juvenile Batten Disease in 2018. This was confirmed only after genetic testing was ordered to determine the cause of her progressive vision loss. This disease occurs in 1 in 100,000 children in the US and can happen when each parent passes down the same mutated gene. Due to the mutation in the CLN3 gene, cell waste cannot be properly disposed of, which leads to cell death and improper function of the central nervous system. Batten disease takes away a once normal child’s vision, speech, mobility and cognition, while also causing seizures, dementia and the ability to swallow food. Life expectancy is late teens to early twenties. There is no cure. However, there is courage and hope based on ground breaking research over the recent years. We refuse to accept the devastating fate that lies ahead and have been doing everything in our power to find another way, or at least a chance to fight back. Endless research and countless hours dedicated to our search for answers has led us here at Duke University. Let the battle begin!