In August we attended the annual Walking With Giants Foundation (WWGF) conference in Liverpool. This year was extra special as it marked their 10th anniversary, with 45 families coming from all corners of the British Isles, France, the Netherlands, Switzerland, Germany, Portugal, Croatia, the US, Australia and Canada. To attempt to describe what this week means to us and the families that attend I have to take it back a few steps and explain a bit more about the individuals it benefits.
MOPD (Microcephalic Osteodysplastic Primordial Dwarfism) describes a set of very rare genetic conditions. Within this group of about 50 children who came together this year, some are yet to receive an exact diagnosis and some are the only one of their kind – true unicorns! The world can be a very lonely place for these children and their families as very few can empathise with what these families are feeling or tell them what the future holds. “Where are the adults?” is often heard at the conference in reference to the limited life expectancy of those with MOPD. Most of these children also look different and the world can be a cruel place. When one of the mums posted that her child had been called a ‘freak’ it broke my heart, not just because of what the child had to endure or the conversation that the parents had to have with their other children to explain that people can be cruel, but also because unfortunately in our society children with disabilities are still seen as different. Society is still learning to appreciate and celebrate these differences.For one week of the year, this amazing charity founded and run by Sue and John Connerty bring all these children together from across the world, to reinforce the message that they belong, and make the world see that despite all the hardships these kids face individually, as a group we are strong, we will continue to support each other through our shared experiences and do what we can to make the unknown a bit more known.
WWGF support the families to feel united, facilitate peer to peer networking and learning and during conference week they put on amazing events and activities, which these children and their families may never have had the chance to experience otherwise. In the first few days the parents had the chance to meet medical professionals from around the world that they may not normally have access to. These doctors are world specialists in their field and are able to give families advice based on their research on the course of action to request from their team of doctors. The problem families face is that nearly all medical professionals have never seen a MOPD child before and are unsure how to treat them. Meeting the doctors and the other families is vital in making sure all our children get the correct care.
The medical conference was held on the third day, where the WWGF Medical Advisory Board doctors and researchers presented on MOPD and their historic and ongoing research. Interestingly for us they described the gene error that relates to MOPD Type 1 (Aiya’s condition). MOPD type 1 is caused by an error on the RNU4ATac gene. The current thinking is that there may be more people with the error on this gene than originally thought, however the spectrum of how the error affects people is vast. Therefore you could be on the extreme side of the spectrum like Aiya where the error on the gene has impacted her globally or it can be so mild you may not be able to notice outwardly that the person has an error on the RNU4ATac gene. This hopefully may mean in the future more connections of similarities can be made, and researchers may be able to suggest health risks for Aiya, but for now we still live in the world of the unknown and learn from the 3 other MOPD Type1 families we have met through being part of the WWGF family.
Sue and John work tirelessly year round and organise a wonderful week of activities and learning for the families. This year they organised 4 days of activities including a sports day, exclusive access to Chester Zoo, a visit to the local soft play centre Bubbles and a celebratory dinner for 176 people. As you can imagine this was an extraordinary feat. Thanks to the generous time and financial donations of places like Bubbles and the staff at Chester Zoo along with lots of fundraising by Sue, John and the WWG family they are able to achieve a memorable week. So here’s the shameless plea if you’re thinking of doing some fundraising – please think of the WWGF and all the great work they do . The Walking with Giants Foundation is an amazing life line to many families from across the world to help them understand how they can help their child. The charity does not only host an annual conference, but also does lots of behind the scenes work supporting families to make life a little bit easier http://www.walkingwithgiants.org/en/
This year’s conference was covered by the media and you can see the report here: http://www.itv.com/news/granada/update/2018-08-18/report-the-walking-with-giants-foundation/
Project Aiya 