The last time anyone saw little Luca Gennuso smile was on Aug. 10 — he actually smiled three times that day — but even a whimper from the two-year-old boy fills his parents’ hearts with hope.
Luca almost drowned in the spring and, by all medical probabilities, should not be alive today.
“But he has his own plan,” his mother Laura Gennuso, 35, told the Toronto Sun. “Luca has a will to live — that’s why he’s beating the odds.”
On May 19 just after 5:30 p.m., his lifeless body was pulled from a backyard pool under construction in his family’s Stouffville home.
Luca had no vital signs for 27 minutes, even though his parents and then paramedics faithfully administered CPR.
At Markham-Stouffville Hospital, doctors were able to revive the 22-pound boy. He was then taken by Ornge ambulance to the Hospital for Sick Children, where he was hooked up to several life-sustaining devices.
A machine helped him breathe, IVs provided antibiotics and medication to regulate his blood pressure and a blanket was used to moderate his erratic body temperature, Laura said.
Doctors prepared the Gennusos for the worst. The boy’s father, Daniel Gennuso, 39, said it was impossible to explain the despair he and his wife shared upon hearing that there was a strong chance Luca was going to die.
“We couldn’t allow ourselves to believe it, but we couldn’t deny it either. We turned to God and prayed with everything in us,” he said.
After three days at Sick Kids’, Luca underwent an MRI , so that doctors could more accurately determine what the effect of being deprived of oxygen for nearly a half hour had on the boy’s brain.
The scan revealed severe neurological damage to the areas of the brain that control movement. If Luca were to survive, there was a great likelihood he would be blind, deaf and immobile.
“We couldn’t look that far ahead,” Laura said. “We still don’t. We take it one step at a time. So, doctors said the next step was to see if he could breathe on his own.”
After two weeks in hospital, technicians removed Luca’s breathing tube. He was able to breathe on his own for only an hour before that failed.
A week later, the decision was made to take out the breathing apparatus once more.
“If he was going to die, it would be in my arms,” she said.
Just like last time, Luca began to have difficulties after an hour without the life-supporting device.
“But then, we saw our miracle,” the boy’s mother said.
The struggle to breathe subsided and Luca was able to survive on his own.
The next challenge would be his lack of a gag reflex. Without it, secretions would build in his lungs until he would essentially drown. Once again, the Gennusos prepared for Luca’s death.
They were sent to Emily’s House, a pediatric palliative care centre in Toronto.
“It was beautiful. We spent time as a family, creating what we thought would be our last memories with Luca,” Laura said.
But there were “more miracles,” Daniel said. Luca recovered his ability to swallow and clear his throat. His eyes began to track people and light up when listening to songs from the children’s shows he loved before the accident.
“We even saw him smile,” Laura said. “These were real smiles, from a real boy who was showing us his desire to survive.”
The Gennusos left Emily’s House in late August and now Luca’s days are tightly scheduled with therapy sessions his parents believe are incrementally improving his brain functions: Hyperbaric oxygen sessions, acupuncture, physiotherapy and Cuevas Medek, an alternative therapy focused on recovering the body’s centre of gravity as an initial step to becoming mobile.
“We’ve seen him awaken. His eyes have life again. Even when he cries — it’s like a whimper — it’s music to my ears, because it’s just one more thing he wasn’t supposed to be able to do. I can hold him, comfort him and he responds,” Laura said.
Daniel and Laura are paying upwards of $500 a day out of pocket for Luca’s treatments.
It has been particularly challenging as both parents have not worked since the near-drowning. Laura closed her successful esthetics studio and Daniel has been on paid leave from his job at IBM.
Laura launched an online fundraising page, accessible at LucasWillToLive.com, on Sept. 16 which has raised more than $67,000 so far. Donations to the family can also be made at any Royal Bank branch using Transit No. 00150 and Account No. 5054085.
The couple said the response from their community has allowed them to focus on their family.
A fundraiser — featuring a petting zoo, silent auction and bouncy castle — is scheduled to run today from noon until 5 p.m. at Altmann Farm, at Hwys. 19 and 48 in Stouffville.
The Gennusos admit they don’t know how much of a recovery Luca will make.
“When he continues to defy the odds, how do we put a limit on what he will be able to do?” Daniel said.
For now, Laura said, they’re hoping to see another smile.
“Luca knows he is loved. By us, our family, friends. Even the strangers who offer their prayers,” she said.