We thought it was Autism. What we found out...unimaginable.

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  • Опубликовано: 17 ноя 2024
  • Money should never stand in the way of a child's chance at life. For our son Connor, money stands in the way. If everyone gives just what they can and shares the video with others, we can do this. Please go to: www.SaveConnor.com. We are forever thankful to kind and generous people around the world helping.
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    We are Connor's parents, Mike and Marisa. We are trying to save our 12-year-old son’s life. Your help sharing our story would be eternally appreciated.
    Connor is happy, loving, and active. He loves basketball, and going to the farm to see the animals. And...he’s dying.
    Connor was diagnosed with Sanfilippo Syndrome, a rapidly-degenerative genetic brain disorder. We thought he had Autism. We thought he was doing "OK." But then we found out the true diagnosis: Sanfilippo Syndrome.
    Sanfilippo is often likened to Alzheimer's, but in children :(. It will steal his ability to talk, swallow, and walk. He will develop seizures and movement disorders. He will suffer pain and severe dementia. And then he’ll die.
    There is currently no treatment or cure. This is all happening to him every second! We wish we could go back to him just being OK with his version of Autism, but we can't.
    This is every parent’s worst nightmare. His healthy little brother Keenan can only watch this happen, unless we can raise this money needed.
    But there is HOPE. There is a clinical trial that could save Connor. The first-ever gene therapy clinical trial for Connor’s type of Sanfilippo Syndrome is moving closer to being ready for children, but it lacks the funding needed. It could save the life of Connor and other children, today and for generations to come.
    But one thing stands in the way: money. Millions of dollars.
    Our family has been furiously fundraising since his diagnosis and has raised $250,000 already. But much more is needed. And quickly because this disease is impacting Connor every minute. Something big is needed.
    My family has created an emotional and rallying video of our story, which we hope will go viral and raise $3 million dollars to fund this clinical trial and Connor’s one chance at life. Our three-minute “Save Connor” video is at www.SaveConnor.com and was launched during the Chelsea Film Festival.
    This video is being shared far and wide by thousands of people. And thousands more are ready to share it. Will you be one, please? Contributing what you are able helps raise the dollars needed to reach this goal.
    For Connor, it is truly now or never. This can happen. It has happened before. It just needs to be seen by enough people.
    This is our one and only chance at saving his life. Your help will make a difference! You will help make this a success story.
    Our deepest thanks,
    Marisa and Mike (Connor's parents)
    SaveConnorNow@gmail.com (please contact with any ideas at anytime!)
    Special thanks to the artists, who graciously dedicated their time and talent:
    Video by Benjamin Von Wong | www.vonwong.com
    Photography by Taproot Photography | www.taprootphot...
    Original music by KeithTim Anderson | www.keithtim.com
    Audio mastering by Andrew Kesler | www.andrewkesle...

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