We are doing the Kiltwalk! Tiny Nora Mackay was born in 2022 at just over a pound. After 9 weeks in the NICU in Glasgow, she is now 17 months old, weighing 7 pounds. Whilst this is unusual, it is because Nora has an extremely rare genetic disorder called Primordial Dwarfism. Primordial Dwarfism affects around 200 people in the world, and means they become proportionately small all over.

However through watching documentaries and reaching out to doctors, we discovered the Walking with Giants Foundation. There is more detailed info about this charity below, however the run down is that this charity helps connect all families around the world of those affected by Microcephalic Primordial Dwarfism to meet each other, meet world leading doctors and spend a joyous week together where the children can spend time together and not feel so alone.

https://youtu.be/R3HzugktJgc?si=cNxWyp5dsJIShz28

About The WWGF

The Walking with Giants Foundation was founded by Sue and John Connerty in 2008. In 2005, their son Alex was born with an unknown condition, however just over a year later he was pre-diagnosed with a condition called Microcephalic Primordial Dwarfism Type II, their son’s doctors at Alder Hey Hospital in Liverpool explained that he was the first child to be pre-diagnosed with the condition in the UK. In those first years of bewilderment and anxiety, John and Sue set on a mission to find out more information.

As this journey was beginning, they were being filmed by a TV Production team. When the story was aired for the first time in the UK, the producers of the series got in touch with them to say they had been contacted by parents/grandparents who watched the show to say they think their child or grandchild had the same condition as Alex.

After receiving this information, John and Sue supported by friends created the Walking With Giants Foundation in 2008 to help other families like themselves and look into the causes of MPD.

It now over 11 years since those early days and the Walking with Giants Foundation now supports children and families from across the world.

Through the Foundation Sue and John have:

helped change the understanding of some of the original sub-types of Microcephalic Primordial Dwarfism, along with finding new subtypes and the genes that cause them via research conducted by Doctors, Scientist on the WWGF Medical Advisory Board and collaborators from other research teams from around the world,

created a network of support and friendship for families here in the UK and around the world,

connected over 100 families and removed the isolation families feel,

brought to the attention of the general public that these conditions exist,

and removed the stigma families feel about there child’s condition and empowered parents to positively deal with what lays ahead.