For the past few years, Gene was helping to take care of my niece, Lynn, age 23, who has many complex health issues. In many ways, he had become her primary caretaker, overseeing much of her transportation and healthcare. He was traveling with Lynn to an appointment when he passed. In his absence, Lynn will not only be missing a loved grandfather, but also an integral part of her support structure as well as the provider of her health insurance. In honor of his core family values and his love and dedication to his granddaughter, we are requesting that in lieu of flowers, mourners wishing to support our family donate to this GoFundMe that will help pay for Lynn's medical expenses as she waits through the long approval process for SSI and medicaid.
Lynn has a rare form of mitochondrial disease called Leigh's Disease. While it typically presents in infants, there are rare cases of adult onset Leigh's Disease. Regardless of its form, Leigh's Disease is always terminal. There is no cure and only palliative treatment. We have only found 6 other openly documented cases of Leigh's Disease in adults, with an average life expectancy of 10-20 years after onset. Leigh's Disease is a neuro-muscular disorder that makes it difficult for Lynn to function on a day to day basis. This is in part due to severe muscle fatigue associated with long term lactic acidosis making it difficult to walk and perform simple daily tasks. This fatigue also contributes to heart and lung failure. Lynn uses a nebulizer nightly to help maintain her lung function. She has yearly testing that must be performed to track the deterioration of her heart, lungs, and brain.
She also has several other serious life-long illnesses. POTS is a cardiovascular disease that also affects Lynn's ability to stand and walk. She requires full compression stockings, worn daily, to manage these symptoms and maintain some mobility. Lynn was diagnosed with another uncommon illness, CSS, which is an increased sensitivity of the central nervous system that causes severe chronic pain. Additionally, she has recurrent seizures and migraines.
Of course, anyone who knows Lynn, also is aware of her progressive hearing loss. She prefers to communicate through ASL and requires interpreters for medical appointments and other important meetings.
Gene was able to help Lynn obtain a service dog, Ji Yeon. Ji Yeon alerts Lynn to noises and the presence of other people. She also is trained to protect Lynn's head in the event that she has a seizure.
Donations to this GoFundMe will help continue to pay for expenses related to Lynn's monthly doctor's appointments and diagnostic testing. It will also help cover the 20+ vitamins, supplements, and prescribed medications that will hopefully improve the quality and longevity of her life. Lastly, we are currently in the process of saving for an electric wheelchair that will help keep Lynn mobile and safe. Due to her weakness and decreased mobility, she is unable to perform necessary tasks independently (ex. grocery shopping, exercising her service dog, attending doctors appointments, or even having a fun outing with friends to the movie theater) and manual wheelchairs take strength and stamina to operate.
Thank you all for the care you showed to my father in his life. And thank you for the care you continue to extend to our family in his passing.
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