The Sidetracked Parent: Navigating Rare Disease Parenting

While neonatal diabetes is rare and occurs in about 1 in every 400,000 live births in the United States, it is usually seen as a random genetic mutation. The Vacchio family somehow beat the random odds by welcoming their two incredible children into this world with the diagnosis.. They may be considered rare, but they aren’t alone.

Christy and Dan had their son Andy in April 2005, but were almost immediately thrown into an unknown world of rare disease when he was diagnosed with idiopathic Type 1 Diabetes at 18 weeks old. In December 2006, Andy's DNA was sent off for genetic testing and his diagnosis was changed to Neonatal Diabetes. In August 2009, their daughter Katie arrived and was also diagnosed, even though, statistically, it should not have happened twice. As they started meeting more families around the world, they saw a huge need.

They realized that there was a greater need for more support and research for the children and patients who have DEND syndrome as well as those with Neonatal Diabetes who are still fighting for a genetic diagnosis or a better treatment. They now work to help as many other families as they can, navigate the road of rare diseases.

* If you are ever unsure about a condition, symptom, or even diagnosis please reach out to a medical professional.

Connect with Christy

Christy on Facebook: https://www.facebook.com/christy.vacchio
The Sidetracked Parent: https://thesidetrackedparent.com/

Support Group: https://www.facebook.com/thesidetrackedparent/

Connect with Katie

Book Katie to Speak or Emcee your Event: https://www.katiecurrens.com/contact
Connect with Katie on LinkedIn: https://www.linkedin.com/in/katiecurrens/
Follow the Podcast on Instagram: https://www.instagram.com/onesparkstories/