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“Sometimes there isn’t an obvious silver lining to cling to, so you have to try and create your own.”

June 2, 2012 By Susannah Fox Leave a Comment

– Kristen Cerabona, mother of a girl living with CLOVES Syndrome, writing about what it’s like to be a “marathon parent.”

Filed Under: e-patient stories Tagged With: caregivers, Rare Disease

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Recent Comments

  • Susannah Fox on Rare Disease in the NYT: “Liz, thank you for sharing this comment! I’m sorry for your loss and the experience you went through. Thank you…” Jul 4, 12:05
  • Liz on Rare Disease in the NYT: “The author’s willingness to grapple with her competing instincts is admirable. As a former “medical mom,” I found the peer-connection…” Jul 1, 21:46
  • Carrie Kimmell on Case study: Trevor’s disease: “Hi Jill – currently Brandon is walking without a limp (he is almost 15 now). He was going to undergo…” Jun 5, 14:07

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