This article originally appeared in Our World in 2016 following the fourth European Family Conference for Myotubular and Centronuclear Myopathy, which was organised by members from Zusammen Stark!, among them Jen and Holger, together with the Myotubular Trust. The conference was attended by 45 families, from 12 countries and 16 researchers from Germany, France, Holland, UK, US and Canada and the weekend had began with the attendees releasing balloons and a wish into the sky.
Sadly, Holger and Jen’s son Emil passed away shortly after the conference ended and on 13 May, Holger and Jen celebrated Emil’s life, again by raising balloons with messages attached, as had been done at the conference.
And many who could not be at the celebration joined in too, releasing balloons around the world, in the UK, throughout Europe and the USA, in Australia, Dubai, Chile, Ecuador and the Dominican Republic, in memory of Emil, this time with messages attached, to be returned to Holger and Jen by whoever found the balloons. Messages were returned from London and Lubeck and another from Kortrijk in Belgium, where it was found by school children, having traveled 500km from the UK.
Emil inspired his parents, Jen and Holger, to found Zusammen Stark! and continues to inspire their fight for children with MTM and CNM. Holger and Jen said ‘we were very touched by the concern for Emil’s death and will continue with Emil’s blog. We are pleased to have so many good friends. It’s amazing what Emil has accomplished in his short life. Emil touched and changed the lives of many people and will always remain in our hearts like all other children with MTM and CNM, who had to leave way too early. We miss him so much but at the same time we are endlessly grateful for his life and for showing us, what is important in life: to love and be loved in return. Thank you dear friends and family for your love. Emil, you remain forever in our hearts’.
Balloons were released from around the world and the places shown on a map, The first cards arrived with Jen and Holger from London and Lübeck. The balloons that traveled the further distance flew 500 km from Chester in the UK to Kortrijk in Belgium, where they were found by school children.