Five years ago our lives were affected by a rare genetic disease.
I will never forget the day my world came tumbling down before me. The day my beautiful baby boy was diagnosed with Norrie Disease.
We could never prepare for what this disease would bring or how it would change our entire world.
But looking back on our journey, we know we are blessed to be part of a family with this rare condition.
Rare is good, rare is unique, rare is BEAUTIFUL.
I can guarantee you will never meet another child like my son, his soul will bring joy to your life forever.
Rare made me STRONG.
I am proud to care for someone rare.
The Norrie Disease Foundation raises funds for family days to provide peer and emotional support to the whole family. These are at the heart of our activities and are so important to the children, young people and adults affected by Norrie disease and their parents and siblings, to be able to speak to others in the same situation as themselves.