Hi everyone, please take a moment to read about Aydriana’s experimental bone marrow transplant journey, which requires us to be here at Duke University for up to a total of 6-7 months (2-3 months hospitalized, 4 close by)) and find out how you can help.
About
As you know, I’m the mother of Aydriana, age 11 (photo below) who is battling Juvenile Batten Disease. Diagnosed just 2 years ago due to the unexpected and progressive loss of vision, we quickly learned of her devastating fate. Batten Disease is a rare and fatal genetic disease caused by a mutation in the CLN3 gene. Because of this defect, the gene is missing a crucial protein needed to carry out cell waste, resulting in toxin buildup and destruction of the central nervous system. Onset of the disease is loss of vision, followed by loss of speech, mobility and swallowing, cognitive decline, behavioral issues, dementia, seizures, becoming bedridden and eventually end of life by early teens to twenties.
As you can imagine, this has been an emotional and challenging journey so far and both her dad and myself have refused to give up. My devotion to this beautiful child has led me to a team of amazing Drs trying to do what has not yet been done; stop or significantly slow the disease progression. The process involves a difficult bone marrow transplant, followed by an experimental spinal injection of super cells, designed to cross the blood brain barrier and reach the cells within the brain at a much faster pace than those already transplanted. If successful, the new stem cells will be able to work in a way that picks up the slack the CLN3 defect is causing and thus halting or slowing the disease progression significantly.
Here’s how you can help:
Aydriana and myself have been in Duke University Hospital since beginning of September. To say this has been the hardest thing either of us ever had to do would be an understatement. There have been many worst case scenario moments and many difficult days but also many marked milestones and victories along the way. Every. Single. Day. is a battle. Not only for her but for myself as her caretaker. We have been here so long and so far from home, I almost forgot how close the holidays and time to hopefully be discharged is approaching. Understandably, I am unable to work during these times, as I’m required to be by her bedside 24/7. This puts us in a position of potentially having no choice but to be placed in a home for families alike, close to the hospital for the next 3 months. Strict restrictions within that group home are placed due to covid (NO visitors, no activities or entertainment outside your room, no eating in the dining areas or being near others in common areas, no going outside, etc.). Aydriana’s recent experience of being rushed to the ICU left her a bit traumatized, as she now suffers from panic attacks, anxiety and depression. We feel moving her to another home similar to her hospital room and its restrictions for the next 3 months would be debilitating to her mental health. To avoid this, I’m looking into short term rentals in the area to provide her with an accommodation that feels like home and will be crucial to her healing and recovery. Without this, my worries and fears take over the anticipated joy of be discharged.
We are asking for your kindness and compassion to help support Aydriana during her recovery. Many challenges and dangers still lie ahead but much is still within our ability to control. Our lives surely are not the only ones in need this year and our hearts go out to anyone who needs them. If a monetary donation is not possible, we only ask for your thoughts and prayers as Aydriana’s road to recovery continues. Thank you and we wish you all a safe and Happy Holiday season!
Follow her journey below:
Aydrianas Battle with Batten 
