A charity in the UK has organised the world’s largest ever gathering of primordial dwarfs.
There’s thought to only be around 100 individuals globally with primordial dwarfism – which leaves people extremely short in stature but with their bones and organs in proportion to their bodies, unlike with other types of dwarfism.
Thirty-five primordial dwarfs flew into Liverpool from all around the world to meet others like them and help raise awareness of the hyper-rare condition.
The Walking With Giants Foundation (WWGF), founded by Sue and John Connerty, from Liverpool, have been running the week-long convention for nine years.
‘The events we put on throughout the convention is a mixture of opportunities to allow families to connect, to bond,’ explains John.
‘The families, at the end of the week, will feel as they’re not alone, they’re not different to anyone else.’
Families, who travelled from as far as Australia, Colombia, Canada and Russia, look forward to the event all year.
Pauline, from New South Wales, Australia, and her 15-year-old son Leo, attended the convention for the second time running.
The teenager has primordial dwarfism type II and his mum values the time spent with other people that are affected by the condition.
‘I remember the first time Leo met with all these people, it was like they were long-lost cousins,’ recalls Pauline.
‘We get a wealth of information talking to other parents that you just can’t talk to normal parents about because we have so much in common with the problems that you have with a special, unique child that is primordial.’
Depending on what type of primordial dwarfism they have, they can suffer with learning disabilities and heart problems.
For some, it was particularly emotional as it was the first time they’d seen another individual with the condition.
It was also the only opportunity some families had received to get a thorough diagnosis as Sue and John organise a specialist doctor to give one-to-one assessments.
‘For a lot of the families this is the first time that they’ve met a similar family with a similar child,’ says John. ‘For them it’s a journey of discovery.’
Robert and Julia, from Holland, brought their 4-year-old daughter Emma to the convention.
Dad Robert says: ‘We were looking on the internet and found out about the group Walking With Giants and we took a look around and it looked familiar, they looked just like Emma.
‘Emma is PD unknown. We’ll be meeting the doctors and we’re looking forward to it. We are a little bit afraid of the unknown, but on the other hand it helps us a lot if we know what she has.
‘The experience of the other children will be great for the future to know what we’re dealing with.’
The Connertys started the charity after their son Alex, who is now 10, was diagnosed with Majewski Osteodysplastic Primordial Dwarfism Type II (MOPDII) – said to be one one of the rarest types.
When Alex was a baby, the Liverpool couple travelled to Seattle, USA, to attend a convention organised by the Little People of America Organisation.
‘When Alex was diagnosed it was very lonely, you search the internet, you trawl everything. And I was just like “Why me?” You’ve got no one to talk to and ask questions,’ says Sue.
John adds: ‘When we first met families we were walking into the unknown, we were scared and within several hours all of our concerns and feelings were taken away from us.’
These days John and Sue dedicate their lives to organising the convention in Liverpool, so families can seek comfort, answers and extend medical research into the condition.
‘Prior to the WWGF a lot of parents and also a lot of doctors had to rely on one research paper that was done 25 years ago,’ explains John.
‘Since then, from bringing these families together, you could say that paper has been rewritten and it’s been replaced by a lot of new research.’
Ethan and Janice King, from Essex, brought their 3-year-old daughter Faith to the convention for the second year in a row.
‘We feel like it’s great that we get the opportunity to have Faith using research for future generations of people with primordial dwarfism,’ says Ethan.
John adds: ‘With the right support, with the right network behind them, they can reach their full potential in life and that’s so important, especially when you live in a world that’s not made for you.
‘I’m so proud that my son is creating a legacy for the next generation of families so that they won’t have to go through what we went through – lack of knowledge, lack of understanding, the stigma.
‘Hopefully in the next 10 years, the next generation of families will be able to walk with their heads tall.’