A birthday wish: 'Saving Eliza' gets final push for medical trial

The parents of Eliza O’Neill, the little girl with an incurable and deadly brain disorder, are making one final desperate push to raise funds for the clinical trial that will test a gene therapy for the disease—and perhaps offer hope for Eliza.

The O’Neills have already raised $1.3 million through a viral video and hope that by Eliza’s fifth birthday on Sunday they’ll hit their $1.8 million goal.

While there is no guarantee that Eliza will be among those chosen to participate in the trial, which could start sometime in the middle of 2015, its organizers say that at this point there is no reason that she wouldn’t qualify.

Over the past year, the O’Neills have tried to focus on aspects of life over which they have some control, such as helping to make the trial a reality and keeping their daughter as healthy as possible. Sometimes, they even allow themselves to think about what life might be like if Eliza was helped by the experimental medication.

“Our hopes are for Eliza to have a life, and a good life,” said her dad, Glenn O’Neill. “I sometimes let my mind go to places of future birthdays and her dating and getting married.”

I have been following this GoFundMe push since the beginning. This family has absolutely done everything they can to push forward a trial that could be a cure for their daughter and others with this rare and fatal disease.

It all started with a Google search for "How to make a viral video". Videographers donated their time, and quickly their site had raised the first million dollars. They had an original deadline date of October, that came and went with 1.1 of the 1.8 million dollars that they needed.

The family has been in strict quarantine for months now. They have tried to keep her mind stimulated to avoid losing her skills as long as possible, and kept her from getting sick, which could cause her to miss a clinical trial.

I am amazed at this family. It reminds me very much of the family behind the movie Lorenzo's Oil.

Today, they have a last push on the day of their daughters 5th birthday. They needed to raise $600,000 more. So far, they have raised $350,000. Please give as you are able. (My family has given 3 times already.)

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