Story
Unique is an open, supportive community for people who are looking to learn, share lived experiences and connect with others whose life has been touched by rare chromosome or gene disorders. They are here to support and celebrate people living truly unique lives.
I'm supporting their mission to raise £34,000 for Rare Chromo Day 2026 to represent the 34,000 families they support.
We are one of those families. Our son Connor was born with pathogenic microdeletion at 20q13.32 within GNAS. At the time of his diagnosis we were told there was only 11 documented cases of this rare chromosomal abnormality.
I had lots of problems whilst pregnant and then connor was born weighing only 4lbs 13oz, he then was ill for months, in and out of hospital constantly fighting but we had no idea what was causing all of these issues. Some doctors accused us of not feeding him others didnt know what was going on but after months of waiting we found out about connor's rare condition. The doctor who told us had never heard of it and we left that appointment scared and confused only able to think the worst. Then we found unique! It was amazing to find this community full of families like ours. We were all scared but hopeful for our wonderful children and support eachother through the really hard times.
Since then connor has been diagnosed with thorolumbar scoliosis, ARFID, vacant episodes and eczema. He has problems with his eyes, teeth and digestive system. We found out he cant gain weight like other kids his age so his muscle mass, height and weight are all really low. Hes gone through an mri, countless x-rays, full body casts, back bracing, endless a&e trips and hospital stays but through it all he stays our happy little boy.
We didnt know what to expect and we still dont know whats to come but we know for sure that Unique has helped us stay strong through it all. Please help us raise awareness for children like connor and raise money for the wonderful charity unique so they can continue their amazing work!
I am running everyday until rare chromo day, please donate or share if you can!
