Three years ago, 3-year-old Eliza O’Neill was diagnosed with Sanfilippo syndrome – a rare genetic disorder with no cure, that results in nerve damage, brain damage, blindness, and eventual death. Her parents Glen and Cara, like any parents, did everything they could to save their daughter.
What they did is worth writing about – it was incredibly successful by any measure, and their feats of love and courage made the difference in whether their little girl will be cured.
Massive but Achievable Goal
Shortly after Eliza being diagnosed, Glen and Cara learned about a clinical trial for a drug that could help their daughter. They knew that it was Eliza’s only shot and they did everything they could to get Eliza into the trial. But the trial didn’t have enough funding.
So Glen and Cara started a GoFundMe campaign in an effort to raise $2 million dollars to get the drug produced. They also created the Cure Sanfillipo foundation so that all donations are tax-deductible, to increase the chance that people would donate.
These were their original campaign videos:
I remember seeing them come up on my notifications, and crying while watching them. Glen and Cara’s love for their daughter and determination to save her were so apparent. Then Eliza’s brother Beckham speaking about wanting to help his sister broke me open. Also, the videos made it obvious that the one thing missing to save this little girl is the $2 million – a massive amount that the family understandably cannot raise on their own without help. Meanwhile, it was a tangible goal – if they can raise $2 million, then they have a chance! It compelled me to donate to this family.
And I was not alone. To date, 36,591 people have donated, and raised more than the $2 million!
With the $2 million, the drug was produced, and the clinical trial started. Eliza was the first child in the world with Sanfilippo syndrome to receive the treatment.
Glenn said that he and Cara now have hope for their daughter’s future, “To go from knowing for certain that your child is fading away with every second and knowing that she is getting worse and worse to a feeling of maybe this is stopping it is indescribable. Maybe she is actually getting better. We’re witnessing a miracle.”
While it’s too soon to tell if she’s improved since the trial, Glenn does see a light in his daughter’s eyes that he hasn’t seen since she was diagnosed as a toddler.
Supporting Other Families
Glenn and Cara want other parents with a child who has Sanfilippo to get the treatment.
“Every child with this disease should have this chance. It’s why we created our foundation. They deserve the chance to live and thrive.”
Since Eliza received the treatment, they are working on raising another $2 million dollars to help other children. So far, a second child has been enrolled and treated.
Before Eliza got accepted into the clinical trial, the family made the difficult decision to live 726 days in a self-imposed quarantine to prevent Eliza from getting sicker and not being accepted into the study.
For 726 days, the family of 4 rarely left the house. When they did, they avoided people and spent time at the beach or at an open field.
Now that Eliza is on the clinical trial, they are finally free to enjoy birthday parties, the swimming pool, and even grocery stores. Beckham, is back with his classmates after being homeschooled for two years.
“The decision we made weighs heavily on us, but we see that Beckham has gotten through it and he understands why we’ve done this for his sister. He’s back with his friends and nothing makes us happier than to see that.”
Everyday, they remind themselves of a quote from a supporter that has helped them through the hard days, “Keep the faith, and the faith will keep you”.
If you would like to support the family, click here.
(All information, pics and videos from GoFundMe.)