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We are in this together.

As part of the SIOD family, we hope to provide you with resources and support through your journey.

Everyone deals with this diagnosis and its impact on their family differently. Whatever your process is, please know that you are not alone. 

We have compiled this Next Steps guide to help walk you through what to expect with an SIOD diagnosis for your child. This document can be downloaded and printed off to give to physicians or anyone who helps to care for your child.

Our Story

We've walked in your shoes. 

We know what it's like to hear that your child has been diagnosed with not just a rare disease, but one that comes with an average lifespan of 9-11 years old.

We know the heartache, we understand the fear.

Facebook support group
This group is for families of those affected by SIOD. This is a safe place to ask questions and voice your concerns! We are all in this together to save our children's lives! 

We know this journey you are on is scary. There are alot of unknowns. That's why finding others who are in this journey helps.

Don't give up hope. Together we will find a cure for this disease!

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