Because Games Matter – Jacob’s Story – Extra Credits

By Adem Lewis / in , , , , , , , , , , , , , , , /

Welcome back to another special
“Because Games Matter” episode of Extra Credits, where we highlight the real-world good that games can do! Today, we’re going to be hearing from a young person that benefited from the Child’s Play charity, Who actually relayed their story in ASL, and had it transcribed for us so they could tell you how much games have mattered in their life. This is Jacob’s story. “Penguin Cap” by CarboHydroM Hi, my name is Jacob! I’m 15 years old and love to have fun. Some of my favorite things are swimming, camping, riding a bike, drawing, baseball, playing card games, fishing, riding an ATV, driving anything remote-controlled, and yes, playing video games! In a lot of ways, I think I’m a pretty typical 15-year-old kid, but in some ways, I’m different from most. I was born profoundly deaf, so my world is silent and I communicate using American Sign Language. I had open-heart surgery at just four months old
to fix a defect in my heart, and I was also born with a genetic disorder called Primary Ciliary Dyskinesia, or “PCD”. It’s a rare condition that causes defects in the tiny hairs or cilia that line my respiratory tract. This means I can get a lot of lung and ear infections. In my case, it also means that all of my organs are positioned in mirror-image inside of my body, a condition called Situs Inversus. Because I have PCD, I’ve been sick a lot in my life. I visit many specialists, have had a lot of surgeries and procedures, and have even had to stay in the hospital several times to treat infections. To stay as healthy as possible, I do breathing treatments with a nebulizer three to four times a day, and during my breathing treatments, I’m also hooked up to a machine called “the vest”. It vibrates and helps me cough to clear my airways. I’m hooked up to these machines for over an hour every day. Now, I don’t like having PCD, but when I’m doing my treatments, or when I’m sick, I get to game, and that is fun! I grew up playing the Nintendo Wii. My favorite thing about the Wii is that my entire family enjoys playing. I’ve spent countless hours battling my brother and two sisters, winning trophies in Mario Kart, conquering Bowser together in Super Mario Brothers, hitting homeruns and bowling strikes in Wii Sports, and shooting tanks in Wii Play. Now, we can be fiercely competitive But ultimately playing the Wii connects us. Since I’m deaf and only communicate through sign language, and my family most easily communicates with spoken English, playing video games has always been a way for us to bond. But a year ago, my life changed drastically when I started having pain in my side. My mom brought me to the hospital and we found out that I had a tumor growing on my kidney. Doctors who aren’t very familiar with all my rare medical stuff sent me to see specialists at C.S. Mott Children’s Hospital in Ann Arbor, a couple hours from my home. I stayed in the hospital for over a week, waiting for surgery to remove the tumor The nurses and doctors took great care of me, but I was scared, isolated, bored, and couldn’t easily communicate with staff and other patients because I don’t speak English. My mom and dad were with me, but I didn’t have many visitors because I was so far from home, so I spent most of my time watching television in my room. That’s when I was introduced
to staff members who work with kids at the hospital
to help them have a better stay. These were Child Life specialists, who comforted me through painful and scary procedures with games on an iPad and filled the long days with painting, playing games, doing crafts, decorating cupcakes, bingo nights, playing drums in the teen room, or just visiting. I also met patient technology staff who came to my room
with Lego robots, a Nintendo switch, Virtual Reality games like Moss, and an awesome little robot named Cosmo. These “video-game guys” quickly became friends to me at a time that I desperately needed them. Their visits gave me something to look forward to and allowed me a brief moment to forget about being sick and in the hospital. I was able to have fun and feel a bit more normal. In the years since I first met them, so much has happened After surgery to remove the tumor, and one of my kidneys, the doctors told us that the tumor was cancer. At the time, I didn’t really know anything about cancer, but everyone looked sad and I knew it was serious. Now I know what cancer is. I know what it does to your body and I know how it makes you feel. I’m familiar with radiation therapy and I know about port access and chemotherapy infusions. I have experienced nausea, constipation, weight loss, fatigue, muscle pain, weakness and losing all my hair. I spent weeks in the hospital recovering from surgery, fighting side-effects of treatments,
and overcoming lung infections. There were hours spent traveling to and from the hospital receiving chemotherapy infusions, visiting doctors, and having more tests, and on top of physically feeling terrible, one of the worst things about it all was the isolation. I couldn’t go to school and I couldn’t have many visitors because of the risk of becoming sick. I couldn’t do so much of what I loved. But here’s what I did have: hope. Even though there was so much to struggle through, There was always hope and something to look forward to, something to live for. Sometimes, hope came in fun and crazy ways, like seeing my friends and staff at the hospital dye their hair blue with me before I lost it all to chemo. I also found hope at pizza and live music nights, the Saturday arcades in the hospital conference room, or playing Xbox Kinect in the teen room. Other times, I found it while playing Moss in virtual reality while getting chemo, racing Mario Kart, battling in Mario Party, making LEGO robots, Driving my RC car down the halls, or splatter painting in the Child Life activity room. One of my favorite memories is having a visit in my hospital room from Santa. When I experienced the joy he brought me, with his smile and gift of a stuffed bear, I wanted to be a part of what he was doing. So I tagged along while he visited other rooms, playing his elf and handing out gifts to other kids. Later, I even tied jingle bells to my wheelchair and rode through the hospital wishing everyone a Merry Christmas in sign language. Thankfully, I was able to spend Christmas at home with my family. a generous friend, knowing I couldn’t do much, and that I loved video games, gave me a Nintendo switch for Christmas. I love it! I spent so many hours playing it while I was sick. My favorite games are Mario Kart and Mario Party. When my friends came to visit or when I was isolated at home with only my family, we played the Switch. I also filled my time playing with my robot buddy Cosmo and my RC car. I don’t know what I would have done without my games and tech. They kept me busy, engaged and distracted from being sick. It’s been a tough year, but I am feeling a lot better now! My chemo is done and so far, my scans have come back cancer-free I still have to do all my treatments for my lung disease, and that will never stop, but I’m doing pretty well with that right now too. Games, activities, and friends in the hospital can’t fix my cancer or lung disease, they can’t take away all the pain and struggle, but they have been a big part of what brings me hope. They’ve helped me through a lot and I’m incredibly thankful for that. Well Jacob, I’m incredibly thankful for you taking the time to share your story with us and giving us the opportunity to share it with so many others. So please give Cosmo a big high-five from Zoe and I, and if you at home would like the opportunity to help kids like Jacob, please head over to Child’s Play Charities via the link below. Not only does Child’s Play support hospitals with the gift of games and toys through their wish list program, but they also provide annual monetary donations to 180 hospitals to help purchase technology and equipment needed to enhance the patient experience, and with the help of folks like you, they can continue to improve the lives of children in hospitals And domestic violence shelters through the power of play and the generosity of the gaming community. Editor’s Note: here’s a break to see the link. “Dire on the Rocks” by FFmusic DJ and Geoffrey Taucer

100 thoughts on “Because Games Matter – Jacob’s Story – Extra Credits

  1. Thank you to Jacob, Victoria, and J.J. for sharing their stories this year! We're grateful that we have the opportunity to share these stories with all of you & end the year on a positive note, showing that games really do matter. Please share your stories of how games have impacted your life!

  2. For the record, Moss is a VR game who"s main character is a mouse the communicates with the player via sign language.

  3. God. You live near Ann Arbor. That’s near me. I’m sorry. Listen I’m four years older then you but I love to game. If you’re ever in Wayne county hmu

    Hearing your words has given me strength.

  4. These stories really brighten up my day as i study game development. They give me motivation to make games that can make someone happy, or even inspire them to do something good in their life.

  5. My kids aren’t allowed to play games, they’re bad for the mind. Games do not matter school does and homework does.

  6. That’s a bamf if I’ve ever seen one! Staying positive in the face of the shittiest odds. Hats off to you, my man!

  7. I always wondered what child's play did exactly, but never took the time to research myself. Now I'm glad so many gaming communities I'm a part of have helped organizations like this give hope and a reason to keep fighting to all these children

  8. Every time i hear a story about a kid with cancer I always this about my brother. When i was really young my oldest brother had cancer. I was to young to understand what was happening

  9. Mott is the only place I've been that, somehow, manages to stay bright and cheerful in the midst of a Michigan winter. Thank you for sharing this story, guys.

  10. One day, you guys will make a video in this series that doesn't make me cry like a baby. Today is not that day.

    Merry Christmas, Jacob!

  11. Merry Christmas Jacob, always warms the heart hearing stories of people doing the best they can with what they've got. Good on you for finding the positives where you can!

  12. Truly you and others like you are stronger then any superhero mate love fae Scotland 🏴󠁧󠁢󠁳󠁣󠁴󠁿 and I know how scary cancer is I lost my gran tae pancreatic cancer

  13. Bless you Jacob and bless those medical professionals who did so much and continue to do so much. You people are real heroes.

  14. did he go to Ann Arbor?? That's where JJ from the story two weeks ago works, right? He might have directly helped Jacob!!!

  15. Can somebody tell him he can use text to speech and speech recongintion software on the phone and that makes "talking" to people possible?

  16. Because of this video I decided to look at the website and buy things for the local hospital. I volunteer all the time at the hospital and the child life specialists really do incredible work.

  17. Whenever I hear these stories I think of the however many children who are less wealthy and barely able to afford any treatment at all never mind entertainment…

  18. Ok this isnt releted to the video but
    Things Like the economy
    The community
    Friendlies Vs tryhards
    You know thing in the game

  19. I was in the hospital a lot as a kid. Child's Play would have been great back then, that's why I support them now. I know from personal experience how kids like Jacob can have more enriched experiences from games, and Child's Play helps with that (and more, they also provide books, movies, and toys). If you're an executive of a hospital, and you have to decide to budget between an expensive, life-saving device, or stuff for kids, you're gonna choose the device. Child's Play helps to fill those gaps for kids.

  20. If you can get the story, one I would love to see you guys cover is Ryan, he is a huge fan of the online Pirate101

  21. smh jacob bruh how you keep going dude's had to suffer through all this i break down into tears doing all my homework S M H

  22. So … you almost made me cry at work. <sigh> Pass my thoughts along to Jacob, his story is not one about adversary but triumph. I pray for his continued health.

  23. What are the chances of MedLife Crisis and EC talking about those very rare people with reversed organ positions in the same day!

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