Martin and Sigge Stengard, father and son, were visiting from Sweden recently and
shared their inspiring story at the newly-renovated Polly Klaas Community Theater
(https://www.pollyklaastheater.org) at a Petaluma Rotary meeting on July 20 th .
Together they told their story of when the family received the devastating diagnosis for
Sigge of Duchenne Muscular Dystrophy (or DMD) when he was about 2 ½ years old.
His twin sister, Hedde, was not affected as DMD primarily affects males.
DMD is a progressive muscle disease that slowly breaks down all the muscles in the
body leading to a significantly shorter life. There have been many advances in the
management of DMD, but there is currently no cure.
 

 
In a very emotional and honest presentation, Martin and Sigge shared the difficulties
and triumphs of a family of five who are exposed to a severe disease like Duchenne.
Initially they were overcome by depression, isolation and hopelessness. The pathway
out of despair came in the form of online gaming and e-sports. Both Martin and Sigge
are highly skilled in the realm of technology (Martin being a cyber security expert).
Martin started a non-profit called Para Esports (www.para-esports.com), a nonprofit
esports organization for disabled gamers. He formed a team of 5 young men all with
DMD, including Sigge of course! They play the game Counter-Strike Global Offensive
(or CS-GO) as a team and also compete. Watch this inspiring video of their trip to
Cologne Germany last summer: https://youtu.be/eedIBaxVGa0
Martin and Sigge, along with wife and mother Tess, were guests of Rotarians Chris and
Shari Ranney in July and they had a wonderful time exploring Yosemite, Tahoe,
Armstrong Woods, Sonoma County beaches and also fit in a trip to Valve, the creator of
CS-GO, in Seattle.