When 7-year-old Beckham O’Neill talks about his sister, he describes her as active — ” hyper all the time.”
While he knows she is sick, he doesn’t know how sick.
“She’s got a very bad disease,” the big brother said.
What Beckham doesn’t know is that the disease afflicting his sister could eventually lead to such a regression in her learning and physical abilities that it could end her life.
Eliza O’Neill looks like a rambunctious 4-year-old, by all outward appearances. Less than a year ago, her parents thought maybe she had some sort of high functioning autism, but they would later learn it was something worse.
“In the backyard, she’s great at soccer, so we tried to get her in league. The fields are so big there that she just likes to take off sometime. And that’s the syndrome, that’s the syndrome affecting her,” Eliza’s father, Glenn O’Neill, told TheBlaze of what they would later learn is Sanfillipo syndrome. “It would manifest like autism and make you think, ‘why are they doing that?'”
Last July, the O’Neills took Eliza to the doctor for some tests, one of which included an MRI that showed she had some flattened vertebrae. Eliza’s mother, a special-needs pediatrician herself, shared this information with a geneticist friend with whom she attended residency. That’s when it was suggested Eliza might have Sanfillipo syndrome.
Eliza was tested for the genetic disorder and found to have the most severe form, occurring in 1 in 70,000 births.
Sanfillipo syndrome occurs when the person doesn’t have the enzyme need to breakdown a sugar chain, resulting in a buildup in the brain. The syndrome manifests itself between 2 and 6 years old when a decline in learning ability becomes apparent, eventually leading to a deteriorating mental and physical state, which could eventually lead to death.
“It hit me like a ton of bricks. You’re going to tell me I have to watch my child fade away within the next year,” Glenn O’Neill said. “That [news came] back in July. It does not get any easier.”
Aside from some behavioral issues, the O’Neills have not yet seen any learning regression in Eliza and her dad said they work hard to try to keep her mind sharp. They fear that like others with the syndrome, she will soon progressively stop speaking and walking, could later develop seizures and eventually die.
While there’s not currently a cure or official treatment — aside from some behavioral modifications — for Sanfillipo syndrome, the O’Neills are very interested in a clinical trial that soon could take place at Nationwide Children’s Hospital in Columbus, Ohio.
The treatment, which was successful in pre-trials, is a gene therapy administered intravenously. If enough funding comes in to run the trial, it could start late 2014. Nationwide Children’s Hospital physicians did not return TheBlaze’s request for more details on the treatment at the time of this posting.
After learning of Eliza’s condition, the O’Neills kicked into high gear, starting to raise funding for the trial themselves in the hopes of enrolling Eliza — something that is not guaranteed either way — and preventing the negative effects of the syndrome before they begin.
Glenn O’Neill established a Go Fund Me site to raise money that would help fund the trial and got several thousand dollars within a few months, but more recently the effort exploded: After a video detailing Eliza’s disease went viral last month, nearly $700,000 of the family’s $1 million goal has come in.
Watch the touching “Saving Eliza” video:
But they aren’t just relying on this funding method. Glenn O’Neill said they’ve been doing more traditional fundraising parties and other events as well. Even Beckham has stepped in.
“He loved putting fliers in mailboxes. He loved when someone would call,” O’Neill said. “I’d be sure to tell Beckham, ‘You put that it in that mailbox on that street.’
“He wants to do lemonade stands. He wants to be involved with helping her,” he added.
Beckham even thought of hitting up Santa Clause for help.
“He asked my wife when she was putting up stockings [this year] if maybe Santa can bring Eliza her medicine,” O’Neill recalled. “She almost lost it.”
In a recent video, Beckham said he wants everything to go back to they way it was before Eliza was diagnosed.
“His life changed on July 17, probably more than any of us,” Glenn O’Neill said. “I hate the fact that he has to grow up so quick.”
Watch the big brother talk about his sister:
Even if the $1 million funding goal on the Go Fund Me site is met, O’Neill said they need another $1.5 million for a total of $2.5 million to help get the trial going. He set $1 million as a more attainable goal on the website and said he’s not sure what they’ll do to get the rest yet, but noted other families with children in a similar situation and organizations have their own funding activities going on as well. All of these sources could come together to get the trial going, O’Neill thinks.
Either way, he said that all the money raised by him will go to the trial, regardless of when it happens.
“I don’t want to look back in two years and have left anything on the table,” O’Neill said. “I’m going after everything we can for next six months to a year.”
And for now, it’s the comments that keep him going.
“Almost everyone on there is saying ‘keep going guys, keep going, keep fighting,'” he said. “It’s the comments that really, really keep you going … from people I’ve never met before, never will.”
This story has been updated to correct that Eliza is 4 years old, not 5 years old.