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| Connor Dobbyn |
The games will be in support of Connor Dobbyn's fight to beat Sanfilippo Syndrome. Connor is the son of CHS Boys Soccer alum Michael Dobbyn (class of 1995). The eleven year old was recently diagnosed with the extremely rare Sanfilippo Syndrome. As of today there is no known cure for this fatal condition. Connor's family has taken on the challenge of saving their little boy's life by raising money and awareness about this terrible disease- often referred to as childhood Alzheimer's.
Our 2019 teams will be wearing purple jerseys with Connor's name on them for the game. We will also be helping to spread the word about Sanfilippo Syndrome. Please help us start that by sharing this post and following all of the social media pages set up in support of this effort. We also ask that you consider making a donation to this important fight today.
Michael, as well as his brothers Ryan and Chris, are part of our strong CHS Boys Soccer alumni family. They are in serious need from us all at this time. Please help any way you can.
Please consider attending our games on 10/24 where we will take the fight to beat Sanfilippo to the pitch!
Donate today- ConnorBeatsSanfilippo
Below is Michael's original Facebook post sharing the news of Connor's battle ahead:
I have some truly heart-wrenching information to share with all of you. Just a few months ago, my family received news that no parent should ever hear or could ever be prepared for... My wonderful and loving son Connor, who recently just celebrated his 11th birthday in June, was diagnosed with a rare, genetic disease called Sanfilippo Syndrome – often referred to as “Childhood Alzheimer’s”.
In short, Sanfilippo Syndrome is a rapidly-degenerative, fatal brain disease that will soon take over his brain and his body and will result in his losing the ability to talk, walk and feed himself. There is no cure and no current way to slow the progression of this disease. Without a cure, we will likely lose him before the age of 20.
It is impossible to put into words just how this made me feel as his father, because my kids are my EVERYTHING. But one thing that I do know is that Connor Dobbyn is NOT going down without a fight. And I simply REFUSE to accept that outcome as his predetermined fate without doing everything in my power to help him win this battle.
After pouring every ounce of my energy (over the past few months) into researching and learning as much as possible about this horrific disease - and relentlessly networking my way across the Sanfilippo community (connecting with families, advocacy leaders, foundations, etc.) - I have grown more hopeful by the day. I am now absolutely convinced that there is enough progress being made with the science to have REAL HOPE in beating this.
My family has made the decision to partner with the Cure Sanfilippo Foundation to aggressively pursue an ambitious fundraising and advocacy campaign that will one day bring Sanfilippo Syndrome type C clinical trials to the starting line and ultimately save lives.
We are going ALL IN and intend to FIGHT LIKE HELL for Connor and other Sanfilippo children and families everywhere. But the bottom line is this: It won’t happen without YOUR help. Stay tuned as we will be reaching out with more information as we begin mobilizing and moving this fight forward for Connor and the rest of our Sanfilippo community. Please do not hesitate to reach out to me directly with any ideas, questions, and potential advocacy and fundraising leads that you may have.
Please SHARE this post and please tell others about this disease, because so few have ever even heard of it. If you’re able to make a financial contribution, please visit www.ConnorBeatsSanfilippo.com.
From the bottom of my heart, please know that your support, thoughts, prayers and ACTION are immensely appreciated at this difficult time. I believe with every fiber of my being that, together we can and will make a difference – not just for Connor, but for all of the brave and courageous Sanfilippo families waging battles to save their children as well.
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