(BPT) – Teenagers love to read comic books, and many even have the desire to write stories, draw comics and create their own books someday. Nineteen-year-old Bo is one of those teens. He loves everything about comic books and drawing — but juvenile Huntington’s disease (jHD) has made it increasingly difficult for him to express his creativity the way he wants. There was a point he didn’t think he would ever see his comic book ideas become reality.
To help Bo create a comic book of his own, Make-A-Wish Oregon and sponsor Genentech partnered with Portland-based Dark Horse Comics, the third-largest comics publisher in the U.S. After working together with Bo on his ideas through many drafts and extensive creative collaboration, the team of artists and writers from Dark Horse Comics helped bring to life Bo’s creation, “The Adventures of Backpack Boy,” and grant his one true wish.
The celebration of Bo’s creative venture was also a team effort, bringing together Bo’s family and friends, Make-A-Wish volunteers, the creative team from Dark Horse Comics and a group of Genentech employees who all helped plan the special event.
Bo and his family were picked up in a limo to be taken to his book-signing event, where Dark Horse Comics presented Bo with special copies of the original art cells used in creating his comic book.
The party featured a spread of Bo’s favorite foods — including pizza, cheese puffs, cheese crackers, Skittles and M&M’s — for 75 guests. Every attendee received a signed copy of Bo’s comic book, and they could also write Bo messages of good will around a special framed copy of his comic book’s cover art. Bo was able to sit and chat with guests at the event, who came to admire his work and support his family. He even had his picture taken with many of them.
“Bodean has a difficult time communicating and showing emotion,” said Bo’s mother, Cara Jacobsen. “It was very sweet to see him make a big effort to tell people about his comic book, and his face lights up. There are so many people very excited for Bo, who love asking him about the progress of his comic. The process is such a positive aspect of his life right now and helps him connect to people who care about him and reach out to him.”
Unfortunately, Bo’s father passed away from Huntington’s disease a couple of years ago, and Bo has both a younger brother and older sister who are also living with the disease. Huntington’s disease is a hereditary, progressive neurodegenerative disorder that makes it increasingly difficult for a person to think, behave and move. Juvenile Huntington’s disease is a less common, early onset form of Huntington’s disease.
There is no cure today, but there are disease management strategies that can help provide some symptom relief. Biotechnology corporation Genentech is currently investigating a number of approaches to help people with rare diseases.
Support from corporate partners such as Genentech is crucial to making wishes come true for children like Bo. “Make-A-Wish could not grant wishes without the generous support of our partners. Working together to positively impact wish kids and their families through the science of good has created a strong win-win partnership,” said Laila Cook, CEO of Make-A-Wish Oregon.
To recognize National Rare Disease Day on Feb. 29 this year, learn how you can help grant the wishes of children with critical illnesses at wish.org.