“She’s our daughter; the child we’ve been given, and we can do this.”
This fiercely determined commitment was their unwavering choice in the face of the unknown. They had discovered their daughter’s multiple tumors months earlier. Later would come the seizures, the surgeries, the medication regimens, the therapies, the constant battle of the everyday. And yet, though darkness loomed, their overcoming light, would shine most brilliant.
Hope would be their daily choice for their precious daughter, Emmaus. Hope prevails in their compelling story.
If one were to see Emmaus in passing, nothing would spur a second look. Her blond whispy hair is beautiful, her smile innocent and contagious, all normal within a quick glance. But there’s so much more.
Within a second look, one would see behind her eyes the invisible battle.
One would see her struggle for words in a world that doesn’t seem to speak her language. If one were to look again, they’d see two parents working from dark to dark, juggling hours of transportation to a therapy program that drains thousands from them in hopes to someday be able to talk with their sweet daughter, Emmaus, in hopes that someday she’ll simply be able to play. One would see two parents staring down each sleepless night, trading shifts of feeding, changing, soothing and repeating through the dark. They rise before the sun to carefully measure out portions for meals attempting to manage the seizures with intricate, calculated diet choices. One would see two parents who covet extra shifts in their jobs just to watch their paychecks be poured out for the bills that don’t end, the claims that get rejected, the needs that are so often unforeseen and then rush in, overwhelming. Their battle of the everyday looks like the two parents who, exhausted and misunderstood face the disapproving stares and pointed criticism of strangers when Emmaus’ paper topped diaper peeks around her waist inciting opinions from those who believe she’s too old to be wearing one, or with fear and frustration, her limits are reached and she falls to the floor in outbursts. It looks like two parents who forego outings and trips and vacations considered rites of passage for seasons and holidays because their dear Emmaus’ diseases have made it impossible for her to face the demands of these situations. It’s two parents who, unrelentingly, unwavering, hold fast to their devotion to providing what is best for their family, providing the best life they can for Emmaus and her two sisters. No choice is easy, no decision is without thought. In their world, the ocean of grieving doesn’t end.
As an infant, the immensity of her condition was breathtaking, but only time would tell what this would mean for her life, their life. A sonogram initially revealed numerous heart tumors in her ventricles. At six weeks old, genetic testing delivered the diagnosis that has changed their life forever. Emmaus has a disease called Tuberous Sclerosis Complex,a genetic disease that has caused her tumor inhibitor gene to malfunction allowing tumors to grow throughout her body and organs. She has tumors in her brain, heart, eyes, and skin. Due to these tumors in her brain, Emmaus has epilepsy. At 17 months, a ping pong ball sized tumor and daily seizures had left her unable to walk, crawl, stand or eat leading her to her first surgery on her brain. Since, the daily seizures have spaced out, and with a pervasive global developmental delay, she functions with developmental skills similar to a twelve to eighteen month old.
Experimental medication regimens have become part of their daily routine. Seizures are still prevalent and the exhaustion of constantly being on “high alert” is heavy in every moment.
Additionally, TS is the leading genetic cause of autism. 50% of children with TS receive an additional diagnosis of autism. Emmaus has recently been diagnosed with it as well. Hours are spent every day driving to various, albeit desperately necessary, therapies. Thirty hours are required each week simply to hope for what is second nature to most children. Her brain, wired so intricately with such intense needs, seems to interpret typical instructions and processes as a foreign language. Intensive therapy provides the intervention required for her to be able to someday communicate her needs and complete a task. Milestones are calculated, worked for and achieved with great perseverance. This family celebrates every step with humble gratitude.
Emmaus and her family’s life will never be smooth. Change does not seem to be on the horizon. The number of doctor’s appointments alone is all-consuming. The closest TS clinic is out of state and frequent travel is required for check ups, med adjustments, MRI's to check the progress of her disease and hospital stays for testing and monitoring. The demand on time and resources in this alone is staggering. The costs of these are not covered by any insurance and are often unforeseeable.
This battle, the life of this family is one of chronic crisis. As Dan and Laurisa explain,
"Supporting a family, choosing to stand next to them, choosing to help long term isn't for the faint of heart, it isn't easy, but those of us living in need of constant help are forever indebted; we are amazingly grateful."
Dan and Laurisa continue on in their fierce love and dedication for Emmaus, her two sisters, their family. They embrace their story with courage, and choosing hope as their legacy and inspiring hope in all who join them.
Join the story with apparel that matters by visiting the Freely Given store here.
90% of all profits from the Emmaus Road line will go towards alleviating the cost of required out of state travel to TS specialists.