Christian forges ahead through the early-spring mud to the edge of the wooded pond. His giddiness comes out in spurts as his eyes catch a glimpse of a brown and white bird kneeling in the brush. He holds his breath and slows down in order not to frighten it. It's a mother goose returning home from winter travels to raise her goslings back in the familiar woodlands of southern New Jersey. “There are creatures everywhere,” Christian whispers, creeping carefully forward towards the water’s edge. Christian watches the goose calmly as she rests upon what appears to be a large nest. He does not threaten the bird, or try to get too close. Instead, he watches wide-eyed, meticulously observing her movements.
His fascination with the goose is no aberration—Christian loves animals of all shapes and sizes. He speaks about his recent field trip to the Philadelphia Zoo and the animals he found there. “I saw baby crocodiles,” he reports excitedly. “They were so small—like this small.” He shows us the unimaginably minute dimensions with his fingers.
However, few creatures alive today take up as much space in Christian’s imagination—or vocabulary—as the prehistoric ones. Dinosaurs and other animals from the mesozoic era fill Christian's limitless imagination and he can rattle off the names of different species effortlessly. “The T. rex is the king of the dinosaurs,” he tells us. “It has the sharpest teeth. Triceratops means three-horned face; Spinosaurus has a spine on its back; and Iguanodon has a big thumb; it's bigger than a person's thumb; Velociraptor has the longest tail.” He continues for some time—there is no end to Christian's thirst for knowledge.
For his parents Noel and Antonio, Christian's bemusement with nature is a welcome sight. Watching him run through the woods brings them a sense of fulfillment and is a sign that things are getting easier. Christian was born with Severe Hemophilia A, a condition that is slowly becoming more manageable for him and his family. “In the beginning, we kept him in a little bubble,” says Noel. “As he got older, we realized that maybe that wasn't the best thing to do. We should let him explore.” This freedom allows Christian to harness his passion—the study of the natural world and an opportunity to be a part of it.
The T. rex is the king of the dinosaurs. It has the sharpest teeth.”
Christian skirts around the exposed roots of an old tree. “What type of tree is this?” He asks with wonder. “It looks o l d.” Just then, one of his shoes slips into a narrow hole between the gnarled roots. His foot gets stuck for a moment and a look of fear rushes across his face. “I’m done climbing,” he says. “Can you help me down?” With an arm to lean on, Christian wiggles his way out, then his eyes land on the swingset, where another boy, a little bigger than Christian, is pumping his legs with a growing smile to match. Christian runs to an available swing and calls over to his older sister, Morgan, to help him gain momentum. “Push me to the sky,” Christian says excitedly. “Like daddy does!”
Hemophilia, despite current treatment options, brings with it a tenuous balance of limitations for growing boys. Trying to keep Christian healthy and bleed-free while still participating in activities that his friends and classmates take part in has been central to the dialogue around creating a safe and socially healthy balance for him. Inclusion and exclusion are still very much a concern. Luckily, Christian seems instinctively poised to handle these decisions, even at a young age. “As he got older he started to learn his own boundaries on certain things he could or couldn't do,” says Antonio. “It helped out a lot, especially in school. He does a lot of the same normal stuff that every other kid would do.” He loves to swim, a low-impact sport, although recently he’s expressed interest in learning karate. “We’ll just have to wait and see,” says Noel. She doesn’t want Christian to be limited in his pursuits and avoiding social stigmatization is as important as keeping him physically healthy. Luckily, Christian understands quite a bit about his condition and has started to take his own precautions.
Recently, a neighborhood friend invited Christian over to take a spin in his new electric, toy jeep. Christian was enthusiastic about the jeep ride until his friend decided it would be more fun to repeatedly crash the vehicle into his neighbor's wooden fence. Far from being delighted, Christian was quick to escape the potentially dangerous situation. “Christian literally got off the Jeep and was like, I'm out,” retells Antonio. “He's starting to know his own limits.” However, Christian's situation is in its essence, precarious. “Everything will seem normal, but it just takes that one second of something happening to just completely flip [our] whole day.” His family has cancelled plans, missed holidays, and made major sacrifices in their day-to-day to alleviate Christian's Hemophilia.
On the swing, Christian is reaching new heights. His laugher blends in with the other kids playing around him, though something is slightly different about Christian. He seems more calculated than the other children and as the swing goes higher, his eyes pass more readily towards the ground. Without a dampening to his fun, Christian’s legs relax from their fervent pumping and his body starts to settle to a more comfortable trajectory. It’s clear he knows what works for him—an impressive and important trait.
He fought us tooth and nail.”
-Noel, Christian's father
When Christian was a baby, he only received factor on-demand, meaning only after a bleed or bruise, which resulted in frequent trips to the emergency room. When he was able to walk and move around on his own, the family transitioned him to prophylactic treatment. “That's when things got rocky,” recalls Noel. Christian hated needles, and it was a struggle to get him to sit still for injections. “He fought us tooth and nail,” says Antonio. “He hated anyone in a white lab coat.” They hired some on-call nurses to help, but even they found it close to impossible to safely do his injections. “Our home nurses advocated a great deal on his behalf,” recalls Noel. They recommended that he get a port surgically implanted. “Everything changed after that.”
With the port implanted, injections became much easier. Soon Antonio and Noel were able to administer Christian's factor themselves, no longer relying on nurses' assistance. “We were going to Disney,” recalls Antonio. “And we were thinking about trying to get all of his care covered down there.” Rather than organizing nurses and care for Christian in Orlando, the upcoming trip motivated Antonio and Noel to learn how to inject him with factor themselves. “Ever since then there's been so much freedom,” says Antonio. “Before, if he banged himself up and had a bruise, we would have to go to the hospital or call the nurse, where now we can just automatically treat it. For the most part we can treat him on our own. It makes his life a lot better.” The family returned from the trip to Disney, an annual tradition now, with a feeling of empowerment and freedom.
If it comes a point that you really can't afford factor, they'll find a way for you."
-Noel, Christian's mother
The liberation they felt would be tempered however from the modern realities of the insurance industry. As factor injections became routine—Christian generally infuses three times per week—the struggle shifted to maintaining affordable access to his medication. Hemophilia is one of the most expensive conditions to treat. “We spend between $12-14,000 a year on factor and supplies,” relates Antonio. He works at a casino in nearby Atlantic City, while Noel stays at home. “I have one of those high-deductible health plans through my job. I have to pay $3,600 before we get any coverage, and then it's an 80/20 split after that.”
Noel obtained a Master’s degree in Social Work, which she utilizes to navigate the complex terrain of insurance company policies. “I think I stayed at home from work just to call and talk to insurance companies,” says Noel. “You're bounced all over the place. It's like a full-time job.” Noel spends her days relentlessly advocating for her son. One of their biggest battles was qualifying for Medicaid. “[We thought] it would be incredibly helpful to us,” says Noel. However, the process came laden in setbacks, and they struggled for over three years. “We got a lawyer and eventually got approved,” says Antonio. But their coverage would not last long. “Within a month or two, we were dropped, even though my income didn't change.” He shakes his head incredulously.
He's the happiest kid ever. He keeps us going."
-Antonio, Christian's father
The high-cost of medication also means that insurance companies are reticent to cover the family, and there have been more than a few times that Christian has been left in the lurch. “Christian has been forced to go without factor,” says Antonio. At the time, neither his private insurance or Medicaid wanted to pick up the tab, leaving the family with no access to factor, and leaving Christian susceptible to bleeds and bruising. “For a whole week he had no insurance. No one wanted to be first.” Noel and Antonio sought out help from the Hemophilia patient community and foundations. “The HTC [Hemophilia Treatment Center] provides social workers and so many resources,” says Antonio. “If it comes to the point that you really can't afford factor, they'll find a way for you.” “HTC fought for us,” remembers Noel. “They made calls. I guess you gotta make phone calls to the higher-ups. It got to the point where even our doctors were making calls.” Eventually, Antonio’s private insurer agreed to cover Christian.
A symbiosis began to develop between the family and the Hemophilia community, and they remain involved in doing advocacy both online and locally. “We try to do the Hemophilia walks every year,” says Noel. The Hemophilia Association of New Jersey sponsors a fundraising walk in April, and most years Christian and family take part. Noel connects with other affected families to give and receive advice. “I think we're just all there for each other,” she says. “Every feeling that we once felt; there's a family that's in the same spot. Everyone just swarms in and gives them advice.” When it seemed that Christian’s medication would run out, the community offered to help out. “I had people message me, saying they would overnight factor to us if needed.” These acts of kindness are not taken for granted.
Though Christian’s health may have been jeopardized in the past, a quick glance reveals no evidence of misfortune. He rests against a favorite play structure with his eyes closed, face poised and concentrated. It appears he’s exploring an inner playground as much at the outer. A few more seconds pass before he opens his eyes. “I’m a red dinosaur,” Christian exclaims. “With a long tail. Try to catch me!” At that, he runs off making a loud roaring sound and repeats the same game for several minutes, in new locations. Noel and Antonio look on with delight. Despite the rigor of providing care, and the tendency to become swallowed up in the complications of navigating the medical system, they manage to set aside the important time that it takes to spend with Christian and his older sister. Today's trip to the park is just another slice of the pie—towards creating a life where Christian is lovingly supported and grows to pursue his already-blossoming passions. “One thing that definitely keeps us going,” reflects Antonio “Whenever we went through the darkest times with Hemophilia, the hardest moments—during those times I look at Christian and he's the happiest kid ever. He keeps us going.”