Issue 2 » Batten CLN8: A Disease that Attacks Our Children
It’s important to fully understand the scope of the Sebastian Velona Foundation because it is not about collecting funds to pay for one particular child’s doctor bills.
It is about collecting funds for all children stricken with Batten CLN8 and curing this horrible disease that afflicts many more children than we think.
If Sebastian Velona can’t get treatment it means that other children afflicted by this disease may never receive treatment. And that can’t be acceptable to anyone reading this article.
To cure a disease, we donate time and money to help scientists and doctors find a cure through clinical research and trials. After that process, health insurance covers the costs of all medical testing required to properly diagnose a patient and to provide treatment for the disease.
Unfortunately, for children suffering from Batten Disease CLN8 there has been no clinical trial yet so health insurance won’t cover the cost. Patients with Batten CLN8 can have symptoms that are similar to other diseases and cause confusion for doctors during diagnosis. Unfortunately, the patients and families experience unnecessary delay of proper diagnosis and therefore necessary treatment to cure the disease or delay its progression.
When health insurance won’t cover the costs, then we as a community need to gather our resources to get this done.
This is a unique opportunity to help many children with CLN8 by donating to Sebastian’s cause because the cure found for Sebastian will be used for other children diagnosed with Batten CLN8. Sebi has a team of doctors who are working on developing gene therapy to stop the progression of batten CLN8, and the doctors have estimated the costs at $3.5 Million based on what it cost another family to develop the clinical trial for Batten Disease CLN6.
Batten CLN8 and its related forms of Batten CLN6 and CLN2 viciously attack children. It takes their eye sight, speech and body movement away leaving them suffering from horrible seizures day and night. Parents are helpless and simply watch their child wither away in pain until death.
This is why our staff at Wealth Wisdom Wellness magazine are committed to helping the Sebastian Velona Foundation. Because if we can save Sebi’s life we are saving countless other children’s lives.
Once the trial begins, a harmless virus, containing the good CLN8 gene, will be inserted into Sebi’s spine via epidural. The virus will travel to the brain and do what viruses do – go viral replacing Sebi’s mutated gene with the good gene.
Sebi (as he is affectionately known) is just 13 and believes he can cure the world with hugs; hence the Healing Hugs Foundation.
He has a strong committed group of parents who love and support him and are on a mission to raise money to fund testing and cure Batten CLN8. Chris Velona and Teri Fox are Sebastian’s birth parents and they have been tirelessly working to find a cure for their precious Sebi. Teri has since remarried to Michael E. Fox, another brave man who entered their lives lovingly and willingly caring for Sebi. Together with Sebi’s brother Gage, and new baby sister Skylar, they are a unique loving family.
What makes them truly unique is that they are committed to finding a cure for this disease even though they know that Sebi may not be able to receive treatment due to the length of time for clinical trials and the aggressive nature of Batten CLN8.
If that does come to pass, Sebi’s legacy will live on, and the funds you donate to enable the clinical trials will undoubtedly help a family you know in the future.
Teri and Michael established the Sebastian Velona Foundation as a 501(c)(3) tax exempt nonprofit project of The Giving Back Fund to find a cure for Batten Disease CLN8.
They will not stop until a cure is found for all children suffering from Batten Disease CLN8.
Donate now online at:
Time is Running Out. Thank you.