Support Aaron's Fight for Health and Hope

Dear Friends and Family,

My name is Stephanie, and I am reaching out to share the story of my son, Aaron, a remarkable young man facing an extraordinary medical journey. In July 2022, Aaron moved to Jacksonville to seek comprehensive treatment at the Mayo Clinic for a series of complex health issues that have challenged him since childhood. Despite turning 31 in January 2024 and possessing incredible talent in computer science, Aaron's daily life is overshadowed by pain, severe muscle cramping, gastrointestinal issues, and medical uncertainty.

Aaron's medical journey began in his toddler years at Vanderbilt Children's Hospital in Nashville, TN, with a diagnosis of Optic Nerve Hypoplasia—a rare condition from birth, limiting his vision significantly. His journey has since expanded to include a diagnosis of Hypermobile Ehlers-Danlos Syndrome (hEDS), Mast Cell Activation Disorder (MCAS), Hemochromatosis, Postural Orthostatic Hypotension (POTS), and a multitude of other conditions affecting every aspect of his life. To make matters worse for him, around 2018-19, he began having problems chewing/swallowing, and holding his head up. Those issues have since expanded to include a large amount of ‘burning pain’ when using other muscles like his shoulders, hands, and legs. From severe muscle spasms – similar to having Tetanus, and a ‘whole-body’ movement disorder called Myoclonus, in his facial muscles, arms & legs (can be compared to enduring multiple/simultaneous charlie horses), to Myofascial Pain Syndrome (MPS) which causes excruciating muscle pain, and what doctors currently ‘suspect’ may be a Mitochondrial Myopathy such as MELAS, MNGIE, or MERRF. Regardless of which one it is, Aaron's health challenges are both debilitating and mystifying.

Despite the thoroughness and enormous efforts of countless specialists and exhaustive testing, including frequent CTs/MRIs, Nuclear Bone CTs, three EMGs/NCVs, muscle/nerve/skin biopsies, a liver biopsy, countless labs and numerous other specialty procedures, Aaron's condition remains largely elusive (as of 2024). Recently, this has been further complicated by MULTIPLE insurance companies disputing much of his treatment coverage, and as such, having dual-coverage has not benefitted Aaron’s case due to THEIR refusal to pay. This has resulted in a daunting accumulation of medical debt, amounting to upwards of $200,000, leaving us in a state of financial and emotional strain.

Aaron's resilience and determination to find answers and a path to better health are unwavering. He continues to work as much as his condition allows, and one day dreams of marrying his supportive fiancé, who has been a constant source of strength alongside him in Jacksonville.

Our family has reached a critical point where the burden of medical expenses and the ongoing search for an effective treatment have become overwhelming and largely unavailable to him due to the ‘lack of a confirmed diagnosis.’ We are launching this GoFundMe campaign to appeal to your generosity, hoping to alleviate some of the financial pressures on Aaron and enable him to continue his treatment (which is currently on-hold due to the insurmountable debt).

Any contribution, no matter the size, will make a significant difference in Aaron's life, offering him hope, support, and the continued opportunity to fight for a healthier future. Beyond financial assistance, we are immensely grateful for your thoughts, prayers, and any advice that may guide us toward new avenues for treatment.

For those who wish to discuss further or offer support in any form, I am available for calls and deeply appreciate your willingness to be part of Aaron's support network. Together, we can make a difference in Aaron's life during this challenging time.

Thank you from the bottom of our hearts for considering our plea for help. Your kindness and support mean the world to me (and Aaron) as he bravely continues his fight for health and happiness.

All the best,

Stephanie