Hudson is a sweet, charismatic, musical and above all, strong 10 year old. Just before starting Kindergarten, Hudson was diagnosed with Juvenile Batten’s Disease (JBD). There are currently 14 different forms of JBD, each varying greatly from person to person. Similarly, the symptoms experienced by each person are unique. Approximately two to four out of every 100,000 children in the United States have JBD. While JBD is a very rare, Hudson and his family remain positive and focused on the future.
When it comes to musical instruments, Hudson has played just about all of them. From guitar, to piano, to drums, Hudson loves them all. “Anything that stimulates his senses,” explained his mom. In addition to his fascination with instruments, Hudson likes to read, travel, and try new foods. Unlike most 10 year old boys, Hudson loves vegetables. “We have learned to cook some of the strangest vegetables,” shared his mom. “We have made everything from broccoli to rutabagas and he likes them all!” Hudson has also been a joyful participant of Special Olympics and even qualified to go to State Games.
For Hudson, one of the symptoms he has experienced with JBD is blindness. While you might think losing his sight over time would be a frustration, “he has never complained about his vision,” shared his mom. “Hudson is so resilient and adapts to everything.” A fun fact about Hudson is he can tell you the name of any state or country just by feeling its shape.
We asked his parents what they have learned from Hudson and they said, “Hudson has taught us how to be parents of a child with a disability. He has shown us that we don’t need to sweat the small stuff.” A few years ago, Hudson and his family did not have much hope for the current treatments available for JBD. They were all too aware of the symptoms Hudson would soon experience and the devastatingly short life expectancy that comes with JBD. But recently, their hope has flourished with new clinical trials that seem promising. To advance these important research efforts and clinical trials, Hudson’s family established the Hugs for Hudson Research Fund at the Beyond Batten Disease Foundation (Beyondbatten.org/Hugsforhudson).
Some of the treatments now in sight are thought to be able to slow the progression of this disease and extend life. In partnership with other families who have a child with JBD, Hudson’s family joined the “Be Project.” The Be Project is a campaign to raise $6 million in 24 months to fund this new treatment. Since 2016, these families have raised $5 million. With only a few months left, they are actively working to raise the last $1 million needed towards their goal. As a part of this campaign, there is a “Be The Change” call to action encouraging participation in their text to donate initiative. By texting HUGS to 501501, a $10 donation will be added to the next phone bill to support continued research for Hudson and all of the other children impacted by Batten disease.
As a special part of their fundraising efforts, Hudson’s family has teamed up with the Columbus Blue Jackets for a night of hockey and philanthropy. On October 20, for every CBJ ticket purchased, $10-$20 will go back to support Hugs for Hudson. For more information regarding this event, visit: bluejackets.com/hugsforhudson.
Hudson and his family have found great support from families all over the world and through their support administrator at the County Board. Together, Hudson’s family continues to persevere and live life to the fullest.
As we left Hudson’s home, his mom said, “I can’t wait for you to come and do a follow up story next year! We have so much hope for the impact this treatment could have on Hudson’s quality of life.” We are excited to follow up with Hudson too! Stay tuned for more Hugs from Hudson in 2019!