Her Fight is Our Fight

Ophelia’s fund keeps rent, travel, and daily costs covered during gene therapy trial

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134 donors
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$13,730 raised of 

Her Fight is Our Fight

Ophelia was the first grandchild, the first niece, and from day one, she had all of us completely wrapped around her tiny finger. We soaked up every single moment watching her grow into the spunkiest, sassiest little soul any of us had ever met. Around her first birthday, things started to shift. Skills she had worked so hard to build began to slip away. After years of searching for answers, she was diagnosed at three years old with Rett Syndrome: a rare genetic disorder that affects brain development and robs girls of their ability to speak, move freely, and control their own bodies. Rett Syndrome doesn't touch who Ophelia is (that diva spirit is alive and well), but it has trapped her inside a body that won't cooperate with her. We have watched this condition steal what should have been a carefree childhood, and it has been one of the hardest things our family has ever faced.

For those of you who have followed Ophelia's journey over the years, who have donated to Rett Syndrome research, who have shared posts and sent prayers - this is the moment we have all been waiting for. Gene therapy has long been on the horizon as a potential breakthrough for Rett Syndrome, and our girl has been chosen as one of the participants in a pioneering clinical trial. Our Opie, a trailblazer, just like we always knew she was.

To make this happen, my sister and her husband Scott will be relocating to North Carolina for three months so Ophelia can receive her treatment. Both of them will be taking leaves of absence from work to be by her side every step of the way. The emotional weight of this journey is already immense, and the last thing I want is for financial stress to add to their burden. If you are able to donate, we are so deeply grateful. But if that's not possible right now, a shared post, a prayer, or simply a good thought sent Ophelia's way means just as much. This little girl deserves every bit of hope, and I truly believe she is about to get some of it back.

Organizer and beneficiary

Tressa Bonasso
Organizer
Fairmont, WV
Sarah Stuart
Beneficiary
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