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. At the time there was little information the doctors could give them about Alex’s condition and many questions asked by Sue and John were left unanswered. For their son, Alex, the condition meant that he spent a lot of time in hospital with serious health issues. In those first years of bewilderment and anxiety, John and Sue set on a mission to find out more information.

In July 2007, Sue, John and Alex went to America on a journey of discovery that would change their lives positively forever. They got to meet other parents and children with the same or similar condition as Alex. Furthermore, they got to meet the few medical experts in the world who had experience, knowledge and understanding of Microcephalic Primordial Dwarfism Type II. Not all their questions were answered but they received enough information to allow them to care for Alex and move forward!

As this was all happening, they were being filmed by a TV Production team for a future episode of the Extra-Ordinary People Series. 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. In total over forty families contacted Sue and John. However, out of the forty children, 11 stood out as being remarkably similar to Alex. With the other parent’s permission, Sue and John sent information to the Doctors in America, who got back to them to say 7 of the 11 may have a form of Microcephalic Primordial Dwarfism. Back then in 2007 there was no genetic testing for MPD as we know it now. The majority of the pre-diagnosis were based on medical information, lack of height, small head size, facial features amongst other common characteristics.

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. Sue and John have worked tirelessly to create a network of support, understanding and research to ensure that other families like themselves, will not suffer isolation and face a difficult time.

Through the Foundation they 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.