My name is Simon Lyng, I am 47 years of age. I’m from Silkeborg, Denmark, and I have previously completed marathons, Vasaloppet on skies and long bicycle events.

In 2008 Julius was born, and at the age of 5 months he was diagnosed with Leigh’s Syndrome – he passed away May 28th 2010. Genetic testing couldn’t determine where in the genome the fault lay. Theodor was born in 2013, he was only 2 months old when his diagnosis once again shook our world. Theodor passed away February 15th 2017.

As Julius was severely handicapped by Leighs syndrom, he never spoke a word and were completely dependent on care in every aspect of life. He never learned to sit up or crawl. Theodor however could walk with the aid of a roller. He went to a wonderful kindergarden for kids with disabilities and he learned to "talk" using "sign-to-speak"-language - a very simple sign-language invented in Denmark. Theodor joined me in the stroller on many running trips, and even on a half marathon in 2016, 5 months before he died. 

The mitochondrial defect has still never been identified, even though we have done everything we possibly could.

We decided, however, that we wanted a life with children, and we have been blessed with 2 beautiful girls, born in 2017 and 2020. Both were adopted as embryos – meaning that the egg and sperm come from donors - and carried in my wife’s womb. Both Isabella and Olivia are healthy and well.

By helping The Lily Foundation, I would love to be able to help other people, to NEVER have to find themselves in the same situation as me and my family. Something I would hope no one should ever have to go through..