This is a story about Philly Mayer, a boy with Spinal Muscular Atrophy (SMA). Such horrible genetic disease that occurs in an estimated 1 out of every 6,000 births does not defeat him, but makes the boy a hero.
Although I’m a broadcast student who is also very interested in photojournalism, I had never thought that I will be attracted by multimedia story until I went to the POYI’s Issue Reporting Multimedia Story & Documentary Project division last month. Compared with traditional storytelling by photos or videos, the multimedia stories contain a mixture of images, text, recorded audio narration/interview, video clips and music. All of these elements make such form of digital storytelling more complete and interesting. Actually, it is a great way to tell stories.
A Thousand More. I was totally impressed by this multimedia story on the MediaStorm. Not only by the boy, but also by the spectacular storytelling, great shooting techniques and perfect editing.
I love the way how the story starts: peaceful sencery, beautiful music and Philly’s narration about his dreams.
This is Philly’s debut. His figure keeps going and going in the sunset. With Spinal Muscular Atrophy, the wheelchair is his legs and foot. I like this debut. Shooting from his back, this scene seems to be a metaphor of his path in life. It looks like a normal shot, but I think it’s a good opening.
When Philly was born, he was a healthy and chubby baby. He has a warm family, kind parents and sibilings. He should be a happy boy. However, everything changed since one day before his first birthday–he stopped walking and his motor skills begun to deterioriate. And then…SMA changed his life, and also changed this family.
The camera is a little bit lower than the eye level of Philly. It’s really important when our subject is a child, especially a child in the wheelchair. Our subject is not merely Central Compelling Character of our stories, or just the one who help us get the story done. In fact, they are people, they are people who are sharing their lives, stories and even pains with strangers (us). Be respectful is the best way to get close to them.
Philly’s legs and foot. Just like that “normal” opening of the story, I also believe this picture has certain meaning that more than “normal”. It might be true that this picture just shows his weak legs and foot with cute shoes, but actually it is really informational. Various cartoon characters on his shoes indicates that Philly is still a naive kid, but his legs with protective model tells people that the little boy has suffered too much pains of life.
To such a young boy, wheelchair and these machines are too cruel. But the reality is always cruel–Philly cannot live without them. Luckily, Philly is a differnt boy. Even though he should take a lot more than his peers, even though the disease stopped him from walking, it does not deprive him of optimism, happiness, courage and love of life.
Many children like swimming. But to Philly, swimming is a training that designed to control his disease. Shooting in the water is a wonderful angle to show the scene that he plays with water–he alters the training to an interesting activity.
The photographer caught this moment when Philly was talking with his frients. Although sitting on the big wheelchair, he is as happy as other children.
Playing games. This close-up shot lasts several seconds, showing the character in the game, manipulated by Philly, was running in labyrinth. Philly says he like playing games because those characters in the games can mobile viberately, but he doese not get that. His words might be gentle, but it is impressive when it combines with this shot.
Philly is unfortunate, but he is also fortunate. His family tried the best to take care of him, love him and make his life full of fun.
This is a special scene that I really like it. Technically, it is a worse shot because the photographer “made a terrible mistake”: Without using the light, Philly is so dark that audience cannot even see his face clearly. However, it is not a mistake. There is a saying that “Standing in front of the darkness shows that there’s sunshine behinds you.” In this shot, Philly sitting in the dark corner, but there’s sunshine behinds him. This shot is another metaphor–audience may get the deep meaning from the “mistake”.
This is the ending of the story. This is not the ending of the story. Philly’s parents were told that he would not live past seven. But I always believe the miracles do exist. I really love the last words “I’ll take a thousand of them….” when the golden sunshine falling on the profile of a hero who’s on a wheelchair.
“A Thousand More is the story of one family’s determination to give their son a whole and vital life. In the midst of a great burden, one small child – with a seemingly endless supply of love – can be the blessing that holds a family together.”
I was inspired by Philly’s spirit. I was touched by his great family.
This a good story.
After watching this story, I read every comment of it. Here are two of them:
“My son passed away Sept 13 2010, at 23 months. He was a weak type II SMA patient. Your movie made me laugh and cry. Thanks for putting it out there for everyone to see.”
“Thank you for making this! My daughter was diagnosed at one month of age with Type I SMA and she wasn’t supposed to be live more than weeks or months but will be turning FIVE. So much more awareness needs to happen, given that it is killing so many of our children. Thank you for the positive spin on what a blessing these wonderful children are to us!”
In fact, these comments also remind me of my responsibility–Being a journalist, I want to tell more and more storeis like this one, to help those people who are less fortunate, raising awareness of whole society,
Sometimes, it’s more than telling a story.
Friends of Philly Fund: a non-profit organization created to raise public awareness and funds for research towards a cure for Spinal Muscular Atrophy (SMA) as well as give support to families with children living with SMA.