Cystinosis causes the body to produce a toxic amount of cystine, which builds up in every cell in the body producing crystals. The kidney are often the first organ destroyed by the disease, I had a kidney transplant when I was 11. My incredible and selfless mother gave me life for the second time when she donated her kidney to me on October 18th, 1994.
After my transplant I experienced many obstacles, diabetes as a side effect of too high of a dose of prednisone (a steroid). Years of battles with both the EBV and CMV viruses that my pediatric transplant team believed were morphing into lymphoma.
Somehow, I powered my way through college and graduated in 2008 with my B.S. in Human Development and Family Studies with a Child Life emphasis.
During 2009 to 2010, I survived an extremely high risk pregnancy. Only about 9 other women with cystinosis have been through this adventure as well. There are many factors that made my pregnancy such a risk, including the fact I had received a kidney transplant, and I had to stop taking Cystagon (the medication that slows down the build up of cystine crystals in the body). On February 1st, 2010 I conquered my own impossible and gave birth to our light, our miracle, our odd defying girl, Sookie. Not only did she survive, so did I, and so did my mother's remarkable kidney.
Currently, I am a huge advocate of organ donation, fundraising for crucial research needs for the Cystinosis Research Network, writing and maintaining my blog, working on my memoir, enjoying and cherishing the wild adventure of motherhood, and assisting the love of my life with the upkeep and growth of our two small business.
I think life chose me, after all.
- Dar Williams