Aydriana’s Story

Site created on August 13, 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!

Newest Update

Journal entry by Christine Dougherty

So I ran outside real quick to grab my Starbucks card from my car around 11pm and when I came back in they refused to let me go up and be with my daughter because it was past 9pm and those were their “rules”. I told him my daughter is up there and sick from a bone marrow transplant TODAY and he said so she’s up there alone? Um, no. I explained the nurse is watching her and while I ran down real quick. This man really had the nerve to tell me well we can’t let anyone back in after 9pm so you’ll have to wait until 6am. Stunned I explain we are from Philadelphia and have been staying on the 5th floor for 2 weeks now and will be here for 2 months. I had no idea so couldn’t leave I thought visiting hours didn’t apply to the pediatric units, as it states in their visitors policy updated for Coronavirus. The female security guard starts repeating herself by they should have explained the rules. I told them I had no idea I couldn’t leave and come back after 9pm. (Am I in fucking jail???) They both repeat themselves with no intentions of changing their mind. Sooo what do you suppose I do? His response? Well you can’t stay in the lobby and you can’t go upstairs so I suggest you get a hotel. Are you kidding me?! I explain I’m not leaving with my sick child upstairs and insist he lets me up. So he says uhhh well I guess I can call an OM (operations manager?) ... then fucking call!! So while I wait a good 30 minutes I’m a balling mess unable to control my emotions at this point. My 11 year old... just got a bone marrow transplant today... we have been here 2 weeks will be here 2 more months... and are from Philadelphia. What kind of sick racist fuck would refuse access to the mother of an ill child to them and try to tell them they have to stay at a hotel away from their child because the nurse is with them like I had said and they’d be just fine. They even called the unit to ask if they had “gone over the rules with me”. For no reason because no matter what they said that wouldn’t get me upstairs. 10 minutes go by while he waits for this OM to call back and then hangs up and as fast as he possibly can tells me they made an exception  I can go ahead sorry for the inconvenience. Well no fucking shit they made an exception!!!!!



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