Rare Disease Day 2021

Today on Rare Disease Day 2021 I would like to take a minute to point out just how rare Bella Grace truly was. Trisomy 18, which is a rare disorder, was the catalyst to several other rare conditions she had. These included Esophageal Atresia and Tracheoesophageal Fistula, Tracheobronchomalacia, Tethered Cord Syndrome and what ultimately took her from us, Guillain Barre’ Syndrome with Miller Fisher Variant.

There are over 300 million people in the world living with rare diseases/disorders. This day helps bring awareness to and raise funds for research for the 6000+ rare disease/disorders that exist today and likely affect someone you care about.

Visit www.rarediseases.org and globalgenes.org to learn more.

Tethered Cord Syndrome - NORD (National Organization for Rare Disorders)

Esophageal Atresia and/or Tracheoesophageal Fistula - NORD (National Organization for Rare Disorders)

Trisomy 18 - NORD (National Organization for Rare Disorders)

Tracheobronchomalacia - Global Genes

Guillain-Barre Syndrome - NORD (National Organization for Rare Disorders)

Miller Fisher Syndrome - NORD (National Organization for Rare Disorders)