Tahnie was 16 months old when she was diagnosed with the rare disease cystinosis. Her parents were told she would most likely not live past the age of 10. During her first years she had rickets, was frequently hospitalized for dehydration, and she vomited constantly as a side effect of the medication she was taking to slow the progression of the disease.
What is cystinosis? Tahnie explains, “Cystinosis causes the body to produce a toxic amount of cystine, which builds up in every cell in the body producing crystals. The kidneys are often the first organ destroyed by the disease.” Fortunately, she had a kidney transplant at the age of 11. The donor was her mother. But it wasn’t clear sailing post-transplant. She developed diabetes as a side effect of the steroids she was taking, and she spent years fighting both the EBV and CMV viruses . Doctors feared the virus would turn into lymphoma.
Always optimistic, Tahnie earned a B.S. degree in Human Development and Family Studies with a Child Life emphasis in 2008. In 2010, she gave birth to a healthy baby girl, despite the extremely high risks involved. She and her husband delight in their miracle child, as Tahnie is one of 10 women to survive pregnancy with cystinosis.
Tahnie is a huge advocate of organ donation, fundraising for crucial research needs for the Cystinosis Research Network, writing and maintaining her blog which is called A Happy Girl. She is enjoying and cherishing motherhood, and assisting her husband in running two small businesses.
Keep up-to-date on this remarkable story on Tahnie’s personal blog.