Seven-year-old boys should be worried about building Legos, eating a minimal amount of green vegetables, scoring soccer goals, and not peeing on the toilet seat. They shouldn’t have to worry about trying to save their little sisters’ lives. But unfortunately for Beckham O’Neill, he’s doing just that.
Beckham’s little sister, Eliza, was diagnosed with a rate terminal genetic disease, Sanfilippo Syndrome Type A, last July. Before it takes her life — which it most likely will if she doesn’t get the right treatment — she will lose her speech and her ability to walk.
Beckham doesn’t know that Eliza’s disease is terminal, according to The Huffington Post. But he knows that she’s suffering from a disease that “clogs up her brain and makes her not learn very well.”
“In one terrifying instant,” after she was diagnosed, Eliza’s dad, Glenn O’Neill, said “we were told that we would have to watch her fade away before our eyes.” Eliza and others suffering from Sanfilippo Syndrome are missing “an essential enzyme for normal cellular function.” Eventually, a toxic material will fill up her brain, leading to severe disability and death before she even hits her teen years. While she’s doing well at the moment, the disease is starting to rear its head. It is with 100 percent certainty, Glenn says, that if Eliza doesn’t get treated soon, she will face irreversible brain damage.
Thankfully, there is some amount of hope. Later this year, a gene therapy trial is scheduled for kids like Eliza — one that would literally stop the disease from progressing overnight. What’s standing in her way? Money. The trials lack funding, and the clock is ticking.
Stop for a moment and imagine that. Your child or sibling is going to die. Unless you have enough money so that they don’t. It’s enough to make you dizzy. Life. Money. Love.
That’s why the family has set up a GoFundMe page, on which they hope to raise $1M to help support the trial, which is underfunded, at Nationwide Children’s Hospital in Columbus, Ohio. To date, they’re already past the $645,000 mark. Working with other families who are trying to raise an additional $1.5M, they can make the trial happen — and save their children’s lives.
Life. Money. Love.
It’s hard to argue that this isn’t a cause worthy of funding. Especially when you watch Beckham on a YouTube video the O’Neill family made about it, in which he pleads, “We really need you to help us get my sister the medicine quickly. I mean immediately.”
If you want to help save Eliza’s life — and let Beckham get back to worrying about 7-year-old problems, not life-or-death ones — make a donation by clicking here.
Screen shot via Saving Eliza
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