Tahnie was born with the ultra-rare genetic disease Cystinosis. She is one of about 4 adults in Utah who are living with this condition. At 42, she is one of the oldest living women in the world with Cystinosis. It is such a complicated illness, and currently she is experiencing several health obstacles that are related to the late stages.
Cystinosis causes crystals to build up in every organ in the body. There are not any Cystinosis specialists in Utah, therefore she is having a difficult time finding doctors who know what to do with her several current urgent needs. There is not a cure to Cystinosis.
Funds raised will go toward her medical bills for various doctor visits, gas to travel to said doctor visits, co-pays that her insurance doesn't cover, and medication as well as anything related to diabetes, a secondary complication she is now facing due to her pancreas failing from Cystinosis.
