Connor’s Birthday Wish: Life

In celebration of their son Connor’s 13th birthday and in hopes of giving him the gift of life, Canton native Mike Dobbyn and Marisa DiChiacchio launched an ambitious fundraising campaign to help fund the first phase of a clinical trial to cure Sanfilippo Syndrome — a rare, progressive and fatal disease that affects children. As of press time, more than $900,000 had been raised toward their $1 million goal. Donations are still being accepted at SaveConnor.com.

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Hi to all of our supporters. This is Connor’s parents, Marisa and Mike. We’re writing, first and foremost, because we want to thank you from the bottom of our hearts for your support since the release of our “Save Connor” video in October 2020. You have been integral in the fight to save our son’s life. Our family can never express how grateful we are that you would help us to cure Sanfilippo Syndrome and “Save Connor.”

Together, we’ve come so far, and your support has been humbling. This journey has been exhausting for our family, starting with the Sanfilippo Syndrome diagnosis in April 2019. Like any family, we initially needed to grieve for the life we thought we knew and come to grips with the new life we face. We went public with our story in August 2019 and the fundraising took off. We anticipated releasing our “Save Connor” video in March 2020, but the pandemic brought the world to a screeching halt. However, a cure can’t wait, so we decided last October that we couldn’t wait any longer and released it.

Fundraising so publicly is a grueling process, putting your family’s struggles out into the public in hopes of saving your child’s life. But we won’t give up.

We know you have been following along and joining our fundraising efforts, so we’re hoping that you’ll come through one more time. We need you to help us reach our goal and finish this struggle once and for all. We are making one final push: to reach $1 million at SaveConnor.com by Connor’s birthday, giving him a chance at life.

Let us explain.

Connor’s 13th birthday is Monday, June 21. This is a pivotal time for Connor. We’ve begun to notice more symptoms and possible regression. Our fear is that he may be at the “top of the roller coaster” and is starting down. It’s unfortunate, but we can halt it. And soon.

Birthdays should be joyful occasions when parents celebrate the accomplishments their children have made in the past year, often talking of how they are “growing up too fast.”

For us, that’s not the case. For our family, each birthday is a painful reminder of the decline we will continue to see if something doesn’t happen soon. Turning 13 years old should not be so bittersweet, and we know come June 21, the tears will flow. We plan for a positive outcome — we must. The alternative is just too painful.

We have done our best to keep you updated. The most recent news is that important contracts with clinical trial suppliers must be paid regarding materials to create the drug product. These steps must be completed now and can’t fall behind.

We need just a bit more and must reach $1 million by June 30 to be able to fully pay for what is needed now.

We have hope that a grant submitted to the NIH will pay for the rest of the trial, beyond what needs to be funded now. For us, stopping this disease and keeping this trial on track just needs a little more funding.

You have carried us, and together we’ve raised more than $650,000 (now $900,000) at SaveConnor.com. It’s incredible, and humbling, and just shy of enough.

So far, we’ve made it a point to not ask you to give again and again. However, we know many of you have, and we are grateful for your generosity. But now, friends, we’ve run out of time. And in this disease, time is everything.

For Connor’s 13th birthday, we’re asking all of the people who have so generously helped our family before to give one more time. To give him the gift of life.

We plan to raise the remaining $350,000 as his birthday gift. With more than 10,000 supporters, it not only “can” happen, it will.

It is ambitious, but you have already made us believers in the impossible. You’ve made us believe in happier birthdays for Connor’s future. We can see it. It’s no longer a far-fetched hope, but a very real possibility: Connor living and thriving in his teen years, high school, and adulthood.

To reach this goal, we need 7,000 supporters to give a $50 birthday gift or 3,500 to give a $100 gift. This must happen now.

If you were planning to give again later in the year, please do so now. This is the time when we need your donation. Connor’s chance at a real future is one $350,000 birthday away. Curing this disease is within reach and in time for Connor.

Will you give this birthday gift of $50 or $100? Your gift gets us even closer to the goal. Also, can you recruit a few friends to do the same?

What better way to end this portion of the SaveConnor.com campaign than to reach the $1 million needed on Connor’s 13th birthday?

We always struggle with how to thank you, someone who is literally helping save our child’s life. Words simply aren’t enough, and we don’t know what sort of actions would be sufficient. We feel that you’d want us to thank you by simply spending quality time with Connor, hugging him, loving him, and making sure we are doing everything in our power to save him. I can assure you that we are, and we will.

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Posted by Canton Citizen on Jun 25 2021. Filed under Featured Content. Both comments and pings are currently closed.