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help find a cure for an extremely cute kid with an extremely rare disease

Hope For Brooke

  • ABOUT BROOKE
  • EVENT 2025
  • CYSTINOSIS
  • DONATE
  • BROOKE'S BLOG

My New Button

July 18, 2016 Ian Pullman
Brooke after surgery to insert a g-tube.

Brooke after surgery to insert a g-tube.

It's been a tough couple of months for Mommy and Daddy as they've struggled to make the decision whether or not to get a g-tube for me.  A g-tube is a feeding tube in my belly that can be used for blended foods and liquids as well as medicine administration.  In the end, Mommy and Daddy reluctantly decided to go ahead with the surgery because my growth has just been too slow.  Mommy tells me it will make me big and strong.  Daddy tells me that I won't have to taste my yucky medicine anymore!  I trust them and my doctor, JJ, so I know they're making the right decision.

I have great doctors and the g-tube surgery went great and I've healed perfectly!  Mommy and Daddy are happy and I like not having to taste my yucky medicine anymore.  Mommy makes healthy blends to feed me through my tube, and medicine time is much easier than before.  I’ve started to like my extra “button” and hopefully I will start to gain weight and height soon!

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Prefer to make a direct donation instead of gambling on the guys’ shad fishing skills? You can visit the CRF website to make a direct donation here: https://www.cystinosisresearch.org/family-stories/brooke-emerson/#donate