When Finnigan Danne set off to find his beloved cat Bella, it was the first time the 12-year-old Dundas boy had ever been alone.
A rare neurological condition meant he was either with his parents, Vanessa Velke and Neal Danne, or a home-care worker around the clock. Wind, loud noises or water could trigger excruciatingly painful attacks of paralysis, so there was no wandering off like other boys his age. He couldn’t walk more than 90 metres anyway without difficulty because of increasing physical disabilities.
Until he died he’d never strayed beyond the driveway of his Trudy Court townhome.
But the gate was open and Bella was out Aug. 6 at about 10 a.m.
„He went on this little adventure on his own,“ his dad said. „He was always in our care, so it must have been rather exciting for him to be on his own.“
As his mother frantically searched for him, Finnigan drowned in a culvert not even 200 metres from home. He was dead by the time his mom called police. Despite hundreds of local volunteers, police canine units and officers on horseback searching, it took until 3:30 p.m. the next day for his body to be found.
„He went peacefully, he wasn’t afraid, he didn’t spend time scared, alone and hiding,“ Danne said. „It was quick. It was like a snap of a finger. It was like someone from heaven came down, took him by the hand and said ‘It’s time to go.'“
The family always knew their time with Finnigan would be cruelly short. A random gene mutation caused cognitive and physical disabilities known as alternating hemiplegia of childhood (AHC).
„When I heard what it was called, I thought, ‘Great he’s going to grow out of it,'“ Danne said. „And than I was told, ‘No he’s going to die young and there is nothing we can do for him.’ It’s a sense of hopelessness.“
Finnigan was one in a million — literally. The condition is so rare that pediatric neurologists are lucky to see one or two cases in their entire career.
„Most doctors are unfamiliar with the disease themselves,“ Danne said.
Finnigan’s first symptom was abnormal eye movements when he was a baby. Like most AHC patients, he was misdiagnosed as having epilepsy.
„We knew he wasn’t as active as other children his age, but babies are babies and they are all different,“ Danne said. „About seven months, we realized there was something up and that was when the whole roller-coaster began. We were years and years considering epilepsy and putting him on crazy diets.“
For the first six years of his life, Finnigan spent more time in McMaster Children’s Hospital than at home. It was an unlikely twist of fate that finally got him the right diagnosis. A student working with Finnigan’s doctor had seen a case of AHC while working in a hospital in Montreal.
„It was a stroke of luck really,“ Danne said. „Or not luck, I guess.“
The condition is a bit different for every child, but its hallmark is repeated attacks of temporary paralysis, as well as episodes of uncontrolled muscle movements. The symptoms disappear while sleeping, but can come back while awake.
„He would go through excruciating screaming pain, as the attack would move from one side of his body to the other side,“ Danne said. „It would be everything from complete paralysis, where he literally had no control of any muscles, including his neck, to a severe limp, but he could still get around.“
The attacks could strike as much as once a day or come one every 10 days. They could last hours or days. Sometimes he wouldn’t be able to communicate at all. Once he was put on life support because his lungs stopped functioning properly during an attack.
„There were all kinds of triggers, so we had to be careful about how he lived his life,“ Danne said. „Yet he was still a little boy. Sometimes you had to just let him be a little boy.“
Finnigan took 13 medications a day, costing his parents about $1,000 a month before they started getting government assistance about a year ago. Danne had to take six years off work to care for him before Finnigan got home care.
Danne now works as a hail repair technician. Velke owns Viva Aesthetics and Spa on Dundurn Street South.
„It was a devastating blow for the family,“ Danne said about Finnigan’s condition. „It was extremely limiting for the family. It was completely isolating.“
Between attacks, Finnigan struggled with increasing physical disabilities and cognitive impairment.
„It was his cross to bear,“ Danne said. „He was never down about it. He was sorry for us when he got sick.“
Like many boys his age, Finnigan loved Pokemon, Skylanders video game and cartoons.
„His iPad was his whole world,“ Danne said. „He learned from it, he was entertained by it. It was with him at all times, except for the time he walked away and drowned.“
Finnigan also enjoyed time with his parents and two brothers, Sebastian and Colin.
„We’d go to Toronto and stay at the hotel and he’d think that was the greatest thing ever,“ Danne said. „Finnegan was a sweet, loving child, who was affectionate, kind and funny. He was a very bright light and really touched a lot of people.“
The family has two cats, but Bella, the black one, stole Finnigan’s heart. He jokingly referred to her as his girlfriend.
„It was almost like destiny,“ Danne said about that fateful Saturday. He was in Calgary on business when he got the call from his wife that „the gate was open, the cat was out there and there was no sign of Finnigan.“
He got on a plane his head filled with „terror — the worst thoughts you could ever imagine.“
To the family, it originally felt like Hamilton police weren’t taking them seriously enough, especially when it took 27 hours to issue an Amber Alert.
„Everybody is panicked so you want things happening yesterday and not waiting and dealing with these protocols,“ Danne said. „As it turned out, they were completely right. They did a good job.“
The parents are so grateful to all who came out and searched.
„It was touching how the community came together for our little boy,“ Danne said. „It was very overwhelming. It renewed our faith in humanity, to be honest.“
While „nothing is really going to help“ with the „devastating“ grief of police coming to their door to tell them a searcher had found Finnigan dead, they want to make sure their son has a lasting legacy.
Research dollars for AHC are few and far between. The family hopes Finnigan’s story will move people to donate to the Alternating Hemiplegia of Childhood Foundation.
A friend has also created a GoFundMe page for the family.