Surely all parents have a deep love for their children. Alex Smith has something even more, or perhaps he is just more capable of showing that love. On Friday at the Santa Barbara Film Fest I went to see THE CHALLENGE, a documentary directed by Peter Williams out of the UK. In the story, Alex Smith trains for and competes in an Ironman, an incredible feat. As if that's not enough for a story on its own, Smith is doing it with his son Harrison in tow, all to raise awareness for a fatal version of muscular dystrophy that Harrison has, called Duchenne. Film festivals being stacked up as they are, after I saw this I rushed over and fought the crowd of 2000 people to see Michael Keaton and Rachel McAdams being honored, but I couldn't handle it and left halfway through. I have incredible respect for actors including these two, but Hollywood can be insular, and something about seeing this documentary first had me on a different page than the actors.
I had a chance to interview CHALLENGE director Peter Williams the next day. "This is a film which really needed to be made because for the people involved it's a matter of life and death." Discovery is interested in buying the movie. "Millions of people will see it, and through that medium of our work, hundreds of thousands of people will get to know something that they didn't know, and that is that there is a killer disease out there, which is killing apparently normal boys often in their teens. That's part of our job. I get frustrated with people who say 'journalists, oh that's newspapers.' It actually means reflecting what's going on in society, and bringing to the attention of lots of people things that really matter."
The first thing I noticed that sets this documentary apart from others is the incredible, epic cinematography. Much of it is from drones. As Alex trains, we see sweeping slomo shots of him swimming during sunset, and riding his bike through the english countryside. Drone footage adds so much dimension. It "gives you entrances, it gives you exits, climax, context," says Williams, who has been working in journalism since he was 15 and has worked for the BBC, and as an executive, and has never stopped telling stories.
Duchenne is the most common fatal genetic disorder to affect children around the world. One in every 3500 male births are Duchenne. If you have it, it means you can't produce dystrophin, a protein you need to build up your muscles. As a result, every muscle in the body deteriorates. At the moment there is no cure and it is 100% fatal. Most kids with it die in their late teens or early 20s. (Harrisonsfund.org) In the movie we see Harrison is able to walk, but 8 months later by the time we are watching it in the theatre, Harrison is no longer walking. "It's quite hard watching it now" Alex said during Q&A.
By doing the race, Alex says he not only wanted to raise awareness for Duchenne, but if he could give his son Harrison a feeling of accomplishing something amazing, it would all be worth it. In the movie as Alex is swimming and Harrison sits on the little boat being towed by him, he puts his arms up in the air like a champion. He looks like a little king perched there. It's so emotional to see.
Besides having a great story, THE CHALLENGE is well done. As Alex is preparing for his race, music harkens the idea of a hero preparing for battle. As we see Alex and Harrison race through different stages, Alex tells us that "the run is in your head" and talks about having to overcome those demons.
The movie is hard to watch at times, having to see an innocent family face tragedy. Every person on earth dies eventually, yet death is still a taboo subject in our culture it seems. Williams does us all a favor by making the subject up close and personal. We hear from Alex's wife, Donna, who talks about how everyone tells her how strong she is and asks how she's coping. "It's not coping. It's a different normal. You don't have a choice." The movie is so inspiring too -- in the face of tragedy we see Alex use what resources he has to fight for a cure to this disease. "If your cards are dealt, then you need to play with them. I play with these cards." Even if it's too late to cure Harrison, he says, at least it can help future cases of Duchenne.
Find out more about the disease and the family at Harrisonsfund.org. Also you can donate there. So far, $75,000 has been raised and scientists are on the search for a cure.
Discovery has said they are interested in showing the movie on Fathers Day.
Bartlett Elisabeth 
