The Real Stories
What would you do if you got news today that your child was going to die? What would that cause you to do, would you drop everything and run in the opposite direction or would you face it head on? On this episode of BeFulfilled, you’ll hear from the director of Project Sebastian, Christopher Velona. In his conversation with Tony, Christopher opens up about his son Sebastian and his fight against Batten Disease, his definition of success, fundraising goals they’ve reached, how their family has rallied together, and so much more. Don’t miss a minute of this powerful and inspiring episode!
What is Batten Disease?
Can you imagine a member of your family suffering from something you’ve never heard of before? While there are a ton different types of cancer, most people are unfamiliar with neurological diseases. Batten Disease is a rare, fatal genetic condition that typically begins in childhood. It is a form of a group of neurological disorders called the neuronal ceroid lipofuscinoses, or NCLs. The term Batten disease is sometimes used to refer to all the NCL disorders. Early signs can be vision changes, seizures, clumsiness, or behavior changes. With time, neurologic deficits worsen, and the individual loses sight and motor skills. Cognitive abilities decline and dementia develops with time. The disease is often fatal by the teens or twenties. Make sure to listen to this episode of BeFulfilled as Christopher Velona puts a face to this terrible disease; you don’t want to miss his captivating story of pain and hope.
Going to bat for those you love.
Let’s face it; death is scary. Everyone knows that they’ll eventually die, but we always think of it as some far off event that will come when we are old and grey. What do you do when you have to face the impending death of a child? Christopher Velona decided that he’d charge head-on into the battle against Batten Disease for his son, Sebastian. Thankfully, Christopher isn’t in the fight alone; he has rallied the support of many friends and family members to raise awareness and resources to help children like Sebastian. Hear more about Sebastian’s story and the fantastic group he has in his corner by listening to this engaging episode of BeFufilled!
As you can only imagine, the struggle against Batten Disease isn’t an easy one. There are many obstacles and challenges that Sebastian and his family have to face on a daily basis. Amidst the backdrop of all these struggles, Project Sebastian is making significant progress in the fight to bring attention to Batten Disease and those it affects. Recently, Senator Scott Wilk helped pass a resolution in the California State Legislature that gave Batten Disease it’s very first recognition weekend. They’ve also recently received great news about a pharmaceutical company that wants to help with some clinical drug trials to help treat Batten Disease. While the battle rages on, the effort is not in vain!
How you can help.
Has Sebastian’s story touched you? Are you looking for ways to help those who struggle to find hope in some of the direst of circumstances? Good news, you have the power to help! One easy way you can help in the fight against Batten Disease is by buying a raffle ticket to win a chance to go to Super Bowl 53 in Atlanta this January. There is hope to treat and possibly cure Batten Disease through gene therapy replacement. This procedure cost $3.5 million is not covered under any current insurance plan. Project Sebastian is creating this NFL experience fundraiser in hopes to meet part of that goal. Learn more about this excellent opportunity to help by visiting the Project Sebastian website located in the resources section at the end of this post!
In This Episode, You Will Learn:
- [0:30] Tony introduces his guest, Christopher Velona.
- [1:30] Christopher’s definition of success.
- [6:45] What is Batten Disease?
- [8:40] How eSight helped Sebastian.
- [12:10] Hitting a major fundraising goal and getting some great news.
- [18:20] Christopher talks about his son, Gage and how he’s supported his brother.
- [20:00] A great way to support Project Sebastian.
- [22:00] The challenges of single parenting with a sick child.
- [26:00] Closing thoughts from Tony and Christopher.