Victor was only four years old when he was diagnosed with epilepsy. At its peak, he would experience more than 200 seizures each and every day, making it impossible to live a regular life. But even worse, they caused his brain to swell, and nothing seemed to make him better.
Before Sainte-Justine came into the picture, Victor and his family, who originally hail from Brazil, were seen by two hospitals outside of Montreal. At that point, his symptoms seemed to indicate a stomach bug, but his mother, Juliana, knew deep down there was something more to it. So they headed to Sainte-Justine to do more tests. That’s where they learned that Victor had epilepsy, a neurological disorder that would prove extremely disruptive to his day-to-day life.
Only two days later, Dr. Anne Lortie, a neurologist and professor at Sainte-Justine, started Victor on treatment in the hopes of reducing the frequency of his seizures. Unfortunately, like 40% of children who share his diagnosis, Victor was resistant to antiepileptic drugs. At the peak of his illness, he endured more than 200 seizures a day. It kept him from living a normal life. But worse than that: it caused his brain to swell so much that the risk of permanent damage was critical.
While the neurology teams were racking their brains to find solutions, Victor started exhibiting a new symptom: uncontrollable twitching in his left foot. That was an indication that he had developed Rasmussen syndrome, a condition so rare that it affects only 2.4 children out of 10 million. What it meant in Victor’s case was that the inflammation had caused the right side of his brain to start to atrophy.
At Sainte-Justine, we were put in contact with the teams who knew how to treat Victor for a very rare syndrome that researchers actually discovered here in Montreal. It’s not the kind of lottery anyone wants to win, but at least we had the good fortune of being looked after by a whole village of specialists. Victor showed tremendous strength of character through it all. And he was indeed a ‘victor’ time and time again, because of them.
After trying several drug regimens to no avail, Dr. Alexander Weil, neurosurgeon, recommended a last-ditch solution to stop his condition from deteriorating further: surgically disconnecting the two hemispheres of his brain. His family consented. They had confidence in Dr. Weil and, besides, there was nothing left to lose. The procedure took forever — a career record for Dr. Weil. Throughout it all, Victor had his best pal by his side: his Batman plushie. But as he was wheeled out of the operating room, it became apparent that Victor was still not out of the woods.
It’s amazing how resilient Victor and other children like him here at Sainte-Justine can be. At every stage of their journey, we are there to support them, to make their experience a little less harrowing and to get through the ordeal together. Your donations go straight to their bedside and make Sainte-Justine an institution that is incredibly well equipped to care for them, both today and tomorrow.
DR ALEXANDER WEIL
Ten days later, at the recommendation of the neurosurgery team, Victor had another operation to try and overcome the epilepsy, once and for all. This time, it worked! Finally, a victory for Victor! He could start a new chapter of his life, beginning with six months of rehab.
With the support of the professionals and teams at the Marie Enfant Rehabilitation Centre, Victor is learning how to be a kid again. From neuropsychotherapy to hydrotherapy, he is working hard to regain his strength. His days are jam-packed, with up to five therapy sessions every day. And helping drive his progress is a depth and breadth of expertise that has blossomed and grown because of your generosity. Victor may still be functioning with a single brain hemisphere, but he and his family are very hopeful about the future.
More Victor-ies, please!
Victor and his family will serve as the proud ambassadors of the Sainte-Justine Challenge to help the hospital be faster than a speeding bullet and more powerful than a locomotive in finding solutions that let more children do battle against the enemy that is a serious health condition. His whole family would like to invite as many people as possible to go the extra mile for Sainte-Justine.
The Sainte-Justine Challenge extends an invitation to the business community to get ready and get set for this teambuilding experience extraordinaire, with participating teams competing to win a series of brain teasers and skill-testing activities — all with the goal of raising $450,000 to make the most of every opportunity to enhance pediatric health care, today and tomorrow.
Join us on October 5, 2022, for our second annual event honouring the true superheroes of Sainte-Justine: young patients like Victor and the professionals who move mountains for them.