A year after going public with son’s Sanfilippo diagnosis

August 24, 2020

A year ago, the parents of Connor Dobbyn decided to go public with his diagnosis of Sanfilippo Syndrome in the hopes of helping raise critical funding for a clinical trial that could save his life. It wasn’t an easy decision and one year to the day, Connor’s mom Marisa shared the pain and hope of the journey thus far on Facebook. She also shared what’s coming next and the continued hope to save Connor.

The following was posted by Marisa on Facebook:

Marisa, mom of Connor Dobbyn, talks about the path of the last year and what's ahead

“Today, August 23rd, is the 1 year anniversary of the day that we went public with Connor’s Sanfilippo Syndrome diagnosis. While it was certainly different than our “diagnosis day” it was almost just as worse for me. I had to face this diagnosis head on now that everyone was going to know. I’ll be honest, I wasn’t ready to “jump in the fight” right away when we found out in April. I’ve always needed to do things on my own terms and on my own time and, while some people in my life haven’t always agreed with that, I know that if you want the best out of me then you give me time and then I will be a force to be reckoned with. I needed time to process, to grieve, to mourn the loss of what I thought my life would look like and what the reality was. I needed to cry, to suffer in silence and, ultimately, prepare to “armor up”, as I like to describe it, for a fight. Because once I’m ready, I’m all in. I needed to be ready mentally, emotionally and even socially. I had been forcing a happy, smiley face on for months, compartmentalizing my reality yet now I had to face this head on.

I’ll never forget that day. Mike and I agreed on a date. Truth be told…I still wasn’t ready…not that I think I ever would be but it was time. I had drafted an email that we had sent out to our closest friends and family the day before and now was the time to tell the public and the rest of our world. We were sitting in my home, perfecting the message, fingers ready to hit “post” on our own Facebook pages and then hugged it out because life, as we knew it, would never be the same. I had chosen to go public on a Friday, leading into a weekend when I didn’t have the kids, so that I could go into hiding that weekend. I didn’t want to run into anyone, I didn’t want the sympathy, the teary eyed looks, etc. That was my worst nightmare. The second I hit “post”, my phone blew up with texts, emails, comments, offers to help, messages, ideas, etc. and I was so overwhelmed that I had to mute my phone. Even to this day, if I’m on a group chat and hear my phone dinging away, I have a little bit of PTSD from that day.

What I didn’t expect was to be met with endless smiles, hugs of confidence, support, ideas, introductions, networking, Facebook post shares, etc. from so many people. Our friends, family and community, near and far, jumped right into the fight and, quite literally, carried me to believe that we could do this. We could save Connor and his Sanfilippo brothers and sisters. They made me believe it was possible. They encouraged me when I was broken. They pumped me up when I was at a loss for ideas. They never ceased to amaze me every time someone donated even one single dollar. What I didn’t realize or even prepare myself for was how much Connor and/or our family has impacted so many people. To see so many people rally together, time and time again, because they feel compelled to help our sweet boy, with a heart of gold, was eye opening and continues to be so for me every single day. What I also didn’t realize was just how strong I am…when I look at Connor and Keenan, I am capable of anything and everything and I will do every single thing in my power to give Connor the best life that he can live and give Keenan as many years as he can with his brother. But that’s where I need your help…

Covid-19 has halted all of our fundraising efforts for a clinical trial for MPS IIIC which is the exact type of Sanfilippo Syndrome that Connor has. We were going to release a video, earlier this year in March, that we were hoping would go viral and raise the $5 million that we needed to finance this clinical trial but we put that on the back burner in light of the pandemic. It’s been over 5 months and every day is still unknown. Are our kids going to school in person or not? Are we, the parents, going back into our offices this year or not? Is it safe to dine in a restaurant or not? Maybe it’s the right time, maybe it’s not but we’re at a point where we’ve realized that a cure can’t wait. Connor can’t wait. These children can’t wait. Would you wait any longer to raise money to save your own child? We’re building momentum again with a fundraiser created by our friend, Pete Reitmeyer, who dreamt up the Step Up to Cure Sanfilippo on October 11th and we’d love for you to join us, share our post, donate, etc. Another Philadelphia Inquirer article is coming your way and our official video release is on October 19th. Be on the lookout for more details!!

I’m asking for and challenging every one of our friends to share our video that day because the sky is the limit. Let’s give Connor the best life that we can and who wouldn’t want to be a part of making history (a clinical trial for MPS IIIC) together. We can do this!! www.fightforconnor.com

Marisa, Mike, Connor, and Keenan

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