Luca Gennuso – The Comeback Kid

City Life Magazine sits down with the inspiring family of Stouffville’s little Luca to discuss his progress and how he continues to beat the odds, one smile at a time.

Twenty-sixteen has been a big year for a little guy like Luca. He’s starting to move his arms and wiggle his toes, and bend his stiff knees when you tickle the soles of his feet. He can slightly hold his head up and eat more liquid foods than he did last year, and on days when he’s feeling extra mischievous he’ll stick out his tiny pink tongue at you. However small or slow-moving these improvements in mobility may be, they’re big steps for a boy doctors said would be quadriplegic, blind and deaf. “I know he’s listening,” says his mother, Laura Gennuso. “We see the potential, we see light,” adds his dad, Daniel.

In the bright kitchen of their Stouffville home, Laura and Daniel are doing what a lot of parents do every day: answering calls from work, pouring cups of coffee, calling out to their two daughters, Sabrina, 10, and Liliana, 8, to come down from upstairs. It’s a radiant spring morning, the kind that sends rays of sunshine through the kitchen screen door; the kind that helps soften the heartache stored deep inside them.

On May 19, 2014, at just 21 months, Luca experienced a near-drowning accident after falling into a pool being constructed in the backyard of the family home.

The scene that unfolded was every parent’s worst nightmare come true. A debilitating blend of shock, panic, fear and guilt shook Laura and Daniel to their cores, as their perfect, energetic boy lay motionless on the ground.

Pulled out of the water almost immediately, Luca received CPR from a neighbour and paramedics before he was rushed to Markham Stouffville Hospital where emergency doctors took over. With no vital signs, everyone involved refused to give up on the boy.

Laura was so hysterical she had to stay back with a police officer who tried to calm her down before driving her to the hospital. Luca took his first breath after 27 harrowing minutes.

He was then transferred by ambulance to the Hospital for Sick Children, where his little body was hooked up to a ventilator and multiple IVs that sent fluids and medication coursing through his veins.

When an MRI showed that his basal ganglia and thalamus — parts of the brain that control movement and coordination — were severely injured from almost half an hour of oxygen deprivation, a positive prognosis was unlikely.

Recalling that day still makes Laura’s words catch in her throat. “I remember bargaining with God, saying, ‘I’ll take him back whatever way you give him to me, whatever condition, I’ll take him back.’ And we did.”

Today, it’s hard to believe how a boy once clinging to life has shown so much progress.

Leaning against the kitchen island, Laura manages to exude warmth as we wait for Luca to stir from his nap. He woke up twice throughout the night and has been up since 5 a.m., she explains. “His sleep is kind of off, let’s give him a few more minutes.” She crosses the room to show me how Luca receives the majority of the nutrients and calories he needs to grow: through a gastronomy tube inserted in his abdomen. Picking up the device, she deftly explains how it works. “It seems really complicated and it was in the beginning, but now we’re better at it.”

Time has given the Gennusos a chance to slowly heal and adapt to their new family dynamic. But there are days when Laura can’t stop her tears, when she can barely leave her bedroom. Her husband, the family rock, is often the one encouraging her out of bed. Her daughter Sabrina interjects: “Sometimes she’s in her room crying, so I say, your son’s right here. Go hug him, go kiss him.”

As if on cue, Luca enters the room in the arms of his nurse. Thick with sleep, his arms and legs hanging rigidly by his side, Laura takes him into her arms and lovingly plants a kiss on his cheek. At just 23 pounds, the average weight of an eight- to 12-month-old, Luca is more baby than bounding toddler. But what he lacks in size he makes up for in character.

I know he’s here to fulfill a purpose. Luca is here to teach people and show people that you don’t give up. Ever

– Laura Gennuso

Turning four on August 19, Luca is a bundle of cuteness, his face lighting up to the sound of Bubble Guppies, his favourite children’s show, which his dad plays for him on repeat via his iPhone. With an infectious smile and warm brown eyes, you may recognize Luca from the Facebook page “Praying for Little Luca,” which has captured thousands of hearts and “likes” from sympathetic friends and strangers across the community and beyond. Detailing his progress with frequent posts, the social media page was set up by Laura and Daniel shortly after the accident as a way to deal with an overflow of questions and concern from neighbours and news outlets. “I would go to the gas station and someone would say, ‘Oh my God, are you Luca’s mom?’ It was just too overwhelming.”

A lot of us think a near drowning wouldn’t ever happen to our families — we are careful; we are attentive. But deep down inside parents know how it takes just one second for your children to disappear from view, to feel the tails of their T-shirts slipping through your fingers as they escape from your tight grasp. Parents make mistakes, every day; the only difference here is that tragedy resulted. They try their best not to be consumed by guilt. They instead focus on Luca’s smile and the possibilities that time and the future will bring.

Those who have been following Luca’s Facebook page have watched his heartbreaking story turn into one of inspiration and hope, of human strength and smashing the odds, no matter what it takes. Luca’s not the poster boy of a near drowning; he’s a child reflecting the strength of a warrior. This is a boy who defied doctors when he began to breathe on his own three weeks after the accident. This is a boy given three days to live and sent to Emily’s House, a pediatric palliative care facility, because he had no gag reflex or ability to cough and swallow — significant muscular movements that keep lungs from drowning in secretions. Seeing young children at Emily’s House dying around them every day, Laura, 36, and Daniel, 41, knew they had to push forward and fight alongside Luca when he let out his first cough. Luca had chosen to live, and he was intended to do great things. “I know he’s here to fulfill a purpose,” says Laura. “Luca is here to teach people and show people that you don’t give up. Ever.”

For the past two years the Gennuso family has displayed remarkable resilience, finding hope — and patience — in the smallest of places. They credit Luca’s will and a variety of therapies that have dramatically helped improve his brain function. Whether it’s holding his head up or smiling at you, these incremental steps are signs of his reawakening; they’re pieces of a puzzle slowly coming together to shape the boy he is today. And just like regular parents of a young family, Laura and Daniel find the balance between school lunches and dance classes, homework and walks to the nearby park, while keeping up with their son’s care. “It’s our new normal,” says Daniel.

Luca, who appeared on the cover of Today’s Parent magazine the month of the accident, continues to receive daily hyperbaric oxygen sessions and hours of intense therapy every day in and out of his home. These include the gentle Anat Baniel Method therapy two to four times a week, and Conductive Education, an intense and multidisciplinary approach for individuals with neurological motor disorders like cerebral palsy, twice a week. Laura and/or Daniel also make the drive from Stouffville to Brampton three to four times a week for his swallow therapy sessions, which he started in November 2014. They’re spending, on average, $1,000 — down from $2,000 — out of pocket per week, which doesn’t include his out-of-the-country treatments, additional annual therapies and supplementary contraptions like a SPIO suit, which helps to strengthen his core and keep his back straight, and a three-month supply of his specially ordered, blenderized food at a price of US$2,000.

Mohamed A. Mohamed, Luca’s swallow therapist, has witnessed a change in Luca from when he first met him six months after the near-drowning accident. At the time Luca was experiencing difficulty swallowing, smiling and ingesting any type of food through his mouth. “Sometimes you work with patients who you think have very good potential but don’t make good progress. And then I work with patients who have no good prognosis and they just surprise you,” says Mohamed, who has a masters in speech and language pathology and an international certification from the International Academy of Orofacial Myology. “Luca is really surprising me. He’s smiling evenly, nicely.

“Yesterday he was doing amazing. It was the first time I looked to his mom and said, ‘Laura, look. I think we are having Luca back.’”

Due to the unavailability of certain medical procedures in Canada, the family recently brought Luca for his second stem cell transplant at the state-of-the-art World Stem Cells Clinic in Mexico. The US$20,000 procedure consisted of extracting cells from his bone marrow and reinjecting them into his spinal fluid, which is connected to the brain stem and can trigger neurological connections. Results from the transplant usually take up to a year, but they’re seeing changes in his cognitive abilities already. The Gennusos first heard about the procedure from another family while taking a course in Advanced Biomechanical Rehabilitation (ABR), a manual therapy for those with brain injury that aims to restore muscle tone and improve range of mobility.

Even though it cost $9,000, Laura and Daniel became certified in ABR therapy so they could assist in Luca’s rehabilitation in the comfort and convenience of their home. They also rent an ABR machine on a month-to-month basis for Luca to sleep in while receiving additional hours of the treatment. “We’re trying to find a balance. It’s about him being happy and comfortable while he receives therapy instead of being stretched and poked and flipped. This is what we’ve been working toward,” says Daniel.

In February of this year Luca was seen by internationally known physical therapist Ray Crallé, who relaxed the boy’s spasticity and stiff limbs with myofascial release, an alternative medicine therapy. While sessions are expensive, they plan to return there for more therapy in August, as well as visit a new clinic in the vicinity that specializes in neurorehabilitation. “We research every day and all night online. Sometimes we’re in bed and our comforter is glowing,” says Laura. Daniel has even tried one of Luca’s medications after noticing that he was especially lethargic. Daniel took one swig of the muscle relaxant and was out. “He’s off of that now. It was so strong I could barely stand.”

After the accident, both parents stopped working to be there for their son. Laura, who closed down her esthetics salon in Markham, now takes appointments at home whenever she can. Daniel splits his time between home and office after returning to his full-time position with Toshiba.

“We never want to live with the ‘what ifs.’ We’re going to try everything,” says Laura. “It’s not to get the old Luca back, it’s to give him the best quality of life. I think last year we struggled with that, because we were like, ‘I just want Luca back. I miss him all the time.’ But in reality he’s not going to be the same boy.”

As for Luca ever walking again, Laura and Daniel are optimistic but it’s not their main priority at the moment. “We used to worry a lot about the walking but right now we need to get him to be cognitive. We need him to respond, we need him to talk,” says Laura, adding how she and Daniel hope to one day open a school for children with disabilities while continuing to spread awareness on the funding needed for kids suffering from acquired brain injury and cerebral palsy.

The Gennuso family is forever grateful for the tremendous support of community fundraisers that have helped with Luca’s overwhelming medical bills that are not covered by OHIP or private insurance. The donations have provided Luca with his best chance of recovery. Upcoming fundraisers include Brain Injury Canada’s second annual Walk with Luca at the Stouffville Royal Canadian Legion, while the Goldpark Group and the Patronato Epasa’s fundraising gala “Luca’s Will to Live” will be held on June 11 at Da Vinci Banquet Hall in Woodbridge.

Every day, the Gennusos count their blessings. They know things could be worse. “I’m thankful that he’s here. I’m thankful that my kids didn’t have to go through the death of a sibling. I’m thankful that my family is still together,” says Laura, who has been married to Daniel for 13 years.

Lying on his back on the living room carpet, Luca is still grinning to the sound of the Bubble Guppies as his loving sisters and parents tickle the bottom of his feet and the tips of his fingers. Their love for him is pure and bright like the sunshine illuminating the room, a deep affection that’s reciprocated in his eyes and in the way he crinkles his nose.

“Do you believe in destiny?” Laura asks. For a few seconds I think about her question. I think about that afternoon when tragedy struck their lives. How could something like this happen to such a great family? I turn to her and nod yes in response. People say God gives you only what you can handle. People say your destiny knocks you down and picks you right up. Luca’s inspiring recovery, buoyed by his family’s relentless support, is exactly that.

To donate, visit www.lucaswilltolive.ca
Praying for Little Luca

PHOTOS BY Jesse Milns

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