GORE BAY—A GoFundMe fundraising campaign has been initiated for Ezekiel Jabulani Allison, Ben and Buhle Allison’s newborn son, who has a rare birth defect called Heterotaxy syndrome that involves the heart and other organs. There are different forms of the condition that vary in severity. Ezekiel’s specific diagnosis is the worst-case scenario known as Heterotaxy-right atril isomerism. Children with this condition have multiple heart defects. They also have abnormalities of the blood returning from the lungs to the heart. And the baby boy does not have a spleen, meaning that an infection can quickly become life-threatening.
Ezekiel was born on February 19 joining his sibling twin brothers and a sister and parents Ben and Buhle Allison. “Ezekiel was born February 19,” Mr. Allison told The Expositor. “Our family moved to Gore Bay from Calgary. I moved here in January 2021, and the first day my wife Buhle and the kids moved here was on my birthday on March 7, (2021).”
“No, we had never heard of Heterotaxy syndrome,” said Mr. Allison who said the couple’s other three children are all healthy. “It could have been a genetic component, or just a fluke that Ezekiel has this birth defect. It was certainly unexpected.”
“The doctors say that one child out of every 10,000 births has Heterotaxy,” said Mr. Allison. “There are a lot of different types, and lot of things can happen. His heart is on the wrong side of his body, and this has caused all the problems he has. He has a two- chambered heart, instead of four, and Ezekiel is missing his spleen.”
“In Ezekiel’s case there is no deformity, but he will have lifelong health concerns,” said Mr. Allison. “He was born a month premature, but he doesn’t look like a preemie.”
“We have been told that Ezekiel’s survival rate to age five is 66 percent,” said Mr. Allison. “His early years are critical because of his heart condition and possible infections. Yes, there are those people who live with (Heterotaxy) well into adulthood, although they can’t participate in sports, for example, while others need a heart transplant and some don’t. There is a big spectrum of possibilities but regardless, he will have a lifelong of health problems.”
Candide Mawoko of Gatineau, Quebec posted the message on the GoFundMe page, and who, along with Debbie Allison (Ezekiel’s grandmother), is organizing the fundraiser.
“In early 2021, Ben and his family relocated to Manitoulin Island, Ontario, from Calgary, Alberta, so that Ben could work alongside his dad (Brad), practicing law as a criminal defence lawyer,” wrote Ms. Mawoko. “In fall 2021, amidst renovations of their new home, Ben and Buhle learned they were expecting their fourth child, due mid-March 2022. Buhle attended the required ultrasounds on Manitoulin Island. At the anatomy ultrasound at the point of 28 weeks, the baby was moving around so much the ultrasound technician could not get an accurate reading of his heart. It took several weeks to get a follow-up appointment.”
“At the appointment, the wee man was head down in the birthing position and still moving around far too much; the technicians were concerned that they still had no real information about the wee man’s heart. One of the local techs gave Buhle a diagnosis of a potential heart problem without any imagery to confirm the diagnosis. It was suggested that Ben and Buhle go to Sudbury for an ultrasound there and a few days later they did that, but the results were the same with the baby boy remaining uncooperative,” wrote Ms. Mawoko. “Ben and Buhle were then told they would need to make the trip to Toronto for detailed imaging of the heart (echocardiogram).”
“Ben and Buhle travelled to Toronto hoping for answers and believing that they baby boy would be okay,” continued Ms. Mawoko. “But, Saturday, February 11, 2022 would soon become a day they would never forget. After several tests and scans, the cardiologist confirmed that their precious baby boy suffered from a rare birth defect called Heterotaxy Syndrome. As the couple sat in a room with half a dozen doctors, they came to understand that though Heterotaxy Syndrome involves the heart and other organs, there are different forms of the condition, varying in severity. In addition, organs such as the stomach, intestines, liver and lungs may be in abnormal places in the chest and abdomen.”
Ms. Mawoko explained, “Ezekiel’s specific diagnosis is the worst-case scenario known as Heterotaxy-right atrial isomerism. Children with this condition have multiple heart defects. They also have abnormalities of the blood returning from the lungs to the heart. Ben and Buhle were also told that their baby boy does not have a spleen, meaning that an infection can quickly become life-threatening. Additionally, the liver and other organs are also on the wrong side of his body.”
With his condition, Ezekiel will require a series of two to three open-heart surgeries, all before the age of three. “Ben and Buhle were also told that Ezekiel’s chances of survival to age five were about 66 percent, but that this would improve after he turned five. So, the plan was that Buhle would travel to Toronto in two weeks (at 38 weeks) and give birth at Mount Sinai Hospital. Ezekiel would then be taken to Sick Kids Hospital,” continued Ms. Mawoko.
“However, Ezekiel Jabulani didn’t want to wait that long. He was born almost four weeks early on February 19 at 11:23 am at the Sudbury Health Sciences North weighing six pounds two ounces. So far, he has done as well as anyone could have hoped. On Tuesday, February 22, Buhle and Ezekiel were transported to Sick Kids in Toronto by air.”
There are many unknowns at this point. “For example, we don’t know how long Ezekiel will need to be closely followed by Sick Kids, though it could be as long as eight months. Buhle will stay in Toronto as long as necessary and the current plan is that Ben will travel from the Island to Toronto for any surgery and as often as he’s able to visit,” wrote Ms. Mawoko.
“Ben and Buhle were advised that all children with Heterotaxy syndrome will require lifelong care by a cardiologist. In many cases, children with this condition will have many needs and require care from different specialist teams for years to come. In light of this, the couple is now in the process of finishing up renovations (on their home) as fast as possible, just in case they are required to sell their home for relocation,” wrote Ms. Mawoko.
“Buhle has always been the primary care provider to their three beautiful children. However, Ezekiel’s condition has changed the entire family dynamic, with the most significant impact being Buhle’s move to Toronto for Ezekiel’s care,” explained Ms. Mawoko. “Though medical costs are covered by health insurance, this new change in life events means that the Allisons are heading into some significant expenses over the next eight months.” She outlined there are two ways the Allison’s can be supported, one being childcare support. The family has had to find childcare services for Micah, Malachi and Thandiwe for as long as Buhle remains in Toronto. The second is food, lodging and transportation expenses. “Sick Kids hospital is just over six hours from Ben and Buhle’s home in Gore Bay and Ben will need to travel back and forth as treatments progress. Ben’s current plan is to work from home four days a week and make the trek to Toronto on the weekends with the other children to visit his wife and son. Accommodation, gas, parking and meals on the road add up quickly. Buhle will also be incurring transportation expenses with travel back and forth to the hospital,” wrote Ms. Mawoko.
The Go fund me fundraising campaign goal is $30,000, and, as of last Friday morning, $6,115 had been raised through donations.
“Ezekiel has been discharged from the hospital but he has to go in for regular oxygen monitoring,” Mr. Allison told The Expositor. “For the next six to eight months, he has to remain near Sick Kids hospital and he will have a lifetime of following up with cardiologists which we hope will be able to take place in Northern Ontario,” adding that the family may have to move at some point to Sudbury or Sault Ste. Marie.
To make a donation toward this fundraiser go online to gofund.me/76ab93d6.
