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Feb. 28, 2022

TOPIC: Patient Stories, Rare Disease Day

#ShowingYourStripes Through Advocacy: Kala’s Story for Rare Disease Day

Posted by Julie Ostroff
Kala smiling with her son Braxton

I am a mom, advocate, fighter and the biggest support to my two-year-old son Braxton, who was born with Phenylketonuria (PKU).

My biggest mission since my son was born was to raise awareness, far and wide, about PKU and what a life with this disease means and looks like. It has become my personal goal to get my senators and representatives to be the first in my state to co-sponsor the Medical Nutrition Equity Act. Rare Disease Day gives one whole day to my son, and one whole day for our community to shout out their support. This year that support is going to be delivered in the form of a postcard to Wyoming’s congressmen and women.

Not all rare disease patients have treatments, and those of us that are lucky enough to have one can hardly afford it. We must fight tooth and nail to get the medically necessary coverage for our loved ones – just to be told no. No two rare disease patients are the same, but insurance is trying to put us all in the same category to tell us what is right for our disease, our body and our treatment. Equity in healthcare means allowing us access to the treatments that work best for our bodies; tube feeding, oral feeding, no feeding, formula feeding, biologics, etc.

For Rare Disease Day, I am hosting a postcard party on social media. Everyone involved will send a postcard from the state in which they live asking Wyoming’s senators and representatives to co-sponsor the Medical Nutrition Equity Act, which will be a first step toward more equitable healthcare.