Born with a rare disease, her parents’ struggle to get help is a stark contrast to what Hilary Lauren believes should be the basic right to survive.
A parent never thinks their child’s purpose in life is to teach others through disease, to bring awareness to a rare condition, spreading an outlier of heartbreak throughout the world. But that is Eliza O’Neill’s notoriety. Her sweetheart face, framed by wispy blond hair, made more beautiful when wind-tossed, her faltering, high voice stringing together tentative sounds amid jumbled words – you can’t help it, your purpose grows.
Time is running out for little Eliza, diagnosed with Sanfillippo Syndrome in 2013. The disease is running its course, and shows itself in cruel ways, tangling thoughts and ideas she tries to verbalize, confusing her. Sanfillippo syndrome, a take-no-prisoners genetic disorder, means Eliza’s small body lacks the enzyme needed to break down heparin sulfate, which naturally occurs in cells. When heparin sulfate builds up, any one of the body’s functions can suffer assault.
As of this writing, Eliza recently celebrated her 5th birthday. This was not just another milestone for her, it was also the deadline to achieve the goal to fund a clinical trial for a gene therapy, the deadline for hope. After a certain amount of progression and build up has occurred in Eliza’s young body, the O’Neill’s will be helpless to do anything but watch the disease take over their daughter. Although they reached their initial funding goal, Eliza still may not be accepted into the trial, and if she is, the therapy may not save her.
I am bothered by one glaring thought, how her striving for treatment shouldn’t be part of the picture; how Eliza, like anyone else, has the right to survive.
Many emotions struck me as I watched the videos for Eliza and read her story. The montage of global help pouring in depicts a hypocritical truth. More money is needed and the goal amount may not be enough. I am a parent, and the worst of the conditions my kids have suffered through runs a fairly tame gamut of migraines, sinus infections, and ear aches — the usual suspects. I can’t fathom the agony and terror that this family can’t escape, but I am heartened they have hope.
We cannot live without hope. It is our salvation from the catastrophe our minds nimbly create, the dark place we want to deny could ever creep into our life, becoming an overwhelming tide. The O’Neill’s are now mid-journey, miles away from denial, where they never imagined they would be.
Eliza pleads for help at the end of a video I watched, but soon she won’t be able to. This story goes far beyond a child losing the ability to communicate as she normally would, a needle-in-a-haystack disorder stealing her volume. Sanfillippo syndrome is yet another disease in the millions of diseases afflicting people.
Why didn’t news coverage lead with Eliza’s terminal status? Because we are overrun with parents pleading with us to save their children, to pay for their treatments? We have grown inured to skyrocketing cancer rates and the far-less-than seven degrees of separation from ourselves to a “big C” patient. Eliza’s disease cuts through the clutter, but it’s a sad fact — disease clutter is real.
America is a wealthy country, all considerations taken into account. Our healthcare is supposed to be progressive, supposed to promise healing. When you get sick in America, you should consider yourself lucky. Where else can the O’Neill’s go when they live in the place offering the most hope and advantage?
A parent would trudge through rainforests to locate a cure secreted under a dewy fat leaf, but there is nothing for the O’Neills, and why? Why are we overrun with disease? With so many options to obtain healthcare it seems we shouldn’t be. And we shouldn’t be because everyone has a right to survive. The strata of the population feeling this particular pain lives from one paycheck to the next, is classified as middle or lower class even though they can’t pay for their children to get their teeth cleaned. Why is healing a privilege of the wealthy? To me, there is no stance, no excuse for people to be denied the access to healing. Ever. It is one stepping stone Eliza and her family should never have to tread upon.
Has medicine devolved from “first, do no harm,” to “do what is in the best interests of the people who scream the loudest, or who can most afford it?”
A smaller pool of sufferers still deserves attention, requires funding and research, but does it merit big medicine’s magic if it only heals one? We can never satisfy everyone, so we strive to please the majority, to silence the roars, and we ignore the mewling of those alienated by their condition. We’ve seen them; they hang out in the shadows proving medicine is not a party of one, or a party of few.
A little girl becomes a crusader through her diagnosis and parents who would do anything to prevent her inevitable suffering. Now they can only tiptoe into the woods of what might be lurking: the decline in her quality of life, assessing the strength of their marriage, giving and giving and giving while going heartbroke. They cling to hope as a balloon to lift them higher, it is the only means to carry them out of the nightmare, even though they were born in America, where we are fortunate when we are sick.
Money really does make the world go round for those that own enough acreage. Of course, it’s easier for those fortunate enough to have money or status of their own, but Eliza’s hope for a future rested on the efforts of her parents to make the world aware of her plight, and on the world responding as they did. And that’s just wrong. Not just for little Eliza, who is in danger of losing her voice. If the day comes she can no longer speak, I want us to do it for her.
Status and money allow the rich to overcome, while lower income people face the very real threat of loss of life or quality of life. Is this how we rank the worth of a person? In terms of money and notoriety? What does the possession of one or both equate to when stacked up against the garden-variety American? I’m not advocating sharing of the wealth, but sharing of the health as supported by political and societal equalization. If there is value to a little girl’s participation in a clinical trial and if, oh I don’t know, her life could be saved, I believe she should absolutely have access to the trial. When we begin to value the lives of all people, not just the elected, the famous, or the wealthy, maybe Eliza and others who’ve found themselves in the midst of a dire and rare diagnosis would have a greater chance to survive.
Eliza O’Neill tells her story simply, a girl who should be given a shot at life, no matter how it plays out, or what treatment her parents decide to pursue.
In America, the super-power nation, should circumstances override financial or other restrictions? How can we rewrite criteria to allow more people access to more effective medicine? It’s time to have this conversation.
I hope Eliza’s right to formulate the story in her own words is realized. I envision her growing stronger and more articulate, learning she has dodged one helluva bullet, that she showed the world a 5 year-old can balance the axis upon which one issue of the healthcare crisis turns.
If you would like to donate to Eliza, please click this link: www.gofundme.com/ElizaONeill
For updates on Eliza’s story, please click her Facebook page link: https://www.facebook.com/ElizaOStory