My Story

In 1984, when I was 16 months old, I was diagnosed with the ultra rare disease, Cystinosis. Because it is so rare, it is often misdiagnosed, and several people in our community go through years and years of horror stories trying to arrive at the correct diagnosis. There was not a lot known about Cystinosis then, and still to this day there are many things that need to be investigated with research studies. My parents were basically told to take me home and enjoy their time with me, because I would not live to see my 10th birthday. The next several years were extremely rough; I had rickets, I was often hospitalized for dehydration, my parents and doctors were doing a delicate and stressful dance to keep my electrolytes in balance, I vomited constantly as a side effect of cysteamine (a medication used to slow down the progression of the disease, it can have very challenging side effects that echo chemotherapy, and lucky me I am someone who has an extremely difficult time tolerating this medication because of the havoc it causes on the body.)

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

17 comments :

  1. You are truly a fighter! What a blessing your child is too! I'm a big advocate for organ donating as well.. And I'm loving that you are choosing joy!

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  2. What an amazing, awe-inspiring story. I have always been, and always will continue to be, in support of organ donation--without it, stories like yours would be impossible, and the world would lose a little of its light because of it. So happy I found your blog!

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  3. I just came across your blog via Pinterest and I am just amazed by your story! I can't wait to read more about you and the life obstacles you have overcome!

    xoxo, autumn // courageouslove.net

    ReplyDelete
  4. You are incredible! My goodness the world needs to hear your story. I'd love to interview if you're interested.
    XO,
    Ashley

    ReplyDelete
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  6. Hello!

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