Quality of Life and Care for Ayden
Donation protected
In April 2023, my son Ayden was recently diagnosed with cerebral adrenoleukodystrophy. It is a rare genetic brain disease that causes inflammation in the white matter of the brain due to an excessive buildup of fatty acids that cannot be broken down due to a mutation of the X chromosone. There is no cure for the disease, but the only way it can be stopped is through a successful bone marrow transfer before symptoms can present.
After two consultations with top transfer teams in New York (Memorial Sloan Kettering) and Minneapolis (M Health Fairview), here were the findings:
- Ayden's disease is very progressed to the point where symptoms are expected to present by the end of this year. This starts with vision loss, followed by hearing loss, and eventually executive function and motor control, affecting his ability to walk. The progression happens quickly and is expected to lead to death in 3 years.
- The two closest matches were found in Brazil and Argentina, but the teams have experienced delays in collecting from the donors in South America lasting up to 6 months, with lack of response and backing out of donor commitment occurring frequently. Due to the small window Ayden has, they suggested a faster process of securing a donor in the US via a stem cell using cord blood, but the closest match is only 6 of 8, which puts him at a significant risk of acquiring graft disease after a transfer, which would not be a desirable outcome.
- Committing to a transfer would involve relocating to Minneapolis for 4 months (the only center willing to treat him) and being confined inside of a hospital that entire time, with 6 months of recovery afterwards avoiding crowds.
- Given the stage of disease progression, if the transfer were successful, symptoms still progress over the following year. Ayden would be without vision and hearing as a best case scenario, so his life would not be normal and he would always need consistent support for the rest of his remaining life.
Given all of this information, his father and I made the difficult decision to let him live his best life now, while he has all of his senses and capacities. We want to let him live happily and with quality in the present, so are preparing to do just that.
This GoFundMe will support Ayden's life experiences in the immediate future and subsequent care as his symptoms progress over time. Ayden is so loving and loved, and we are prepared to give this kid the best life possible while he is here with us. Please help us accomplish that goal.
Organizer
Shawntell Manning
Organizer
Trenton, NJ