Imagine having to stay in the hospital over Christmas: Not being able to leave your hospital bed to enjoy festive feasts and celebrations with family and friends.
For one Bradford family, this will be their third Christmas in a row spent at SickKids Hospital in Toronto as two-year-old Braydan Giles fights for his life.
Braydan was born on Aug. 26, 2017. When he was six weeks old he started projectile vomiting, prompting his parents Kayla Faulkner and Steven Giles to bring him to the emergency room.
From there, they ran various blood tests and X-rays. It was discovered the baby’s white blood-cell count was extremely high, which had them rushed to SickKids Hospital for further testing.
Once they had arrived, it was learned that Braydan had fractures on his ribs, shoulder and ankle, caused from weak bones.
It was there he was diagnosed with an immune disorder.
The immunology team at the hospital came on board to work with Braydan over the next three weeks for treatment until they were able to go home.
But two weeks later, they were back at the hospital, intermittently fighting off various infections.
In December 2017, he was diagnosed with severe combined immunodeficiency, a rare disorder caused by mutations in the genes, making for a weak immune system.
In January 2018, the little boy was back in the hospital full-time, fighting off a norovirus, which only just recently cleared, lasting a total of 642 days.
In May 2018, Braydan received a bone-marrow transplant to replace his immune system and was only well enough to be released just this past fall.
He wasn’t home for a month yet when on Oct. 25, he wasn’t responding to his parents and developed a fever.
“He was perfectly fine, running around the Thursday the 24th,” Faulkner recalled. “Then on Friday the 25th, he wasn’t waking up. I knew something was up.
“We were thinking it was a blood infection that he is prone to.”
Faulkner drove down to SickKids and, about 20 minutes from the hospital, Braydan began to shake and his body was stiff. She thought he was having a seizure.
She pulled over, desperate to help her son.
“It was probably the scariest thing I ever had to witness,” she said.
When she finally made it to the hospital, the doctors told her Braydan was suffering from dystonia, which is when the muscle contracts uncontrollably.
Since being admitted back in October, doctors have discovered lesions on Braydan's brain.
There are various groups at the hospital, including the immunology team, working on treating Braydan and figuring out the next course of action.
“The damage that’s done is done. We are going to be staying here until he is more medically stable then going to a rehabilitation centre and we don’t know how long he will be there for,” explained Faulkner.
Faulkner noted how the family has not really been home since Braydan’s birth, noting the only time they were allowed to go home was for Braydan’s second birthday.
“We’ve been here for every holiday other than his second birthday. The only reason we were out was because we bribed the doctors to let us come home and then we were re-admitted,” said Faulkner.
Currently, Steven stays in the room full-time with Braydan, while Faulkner and her youngest son, eight-month-old Caleb, have a room next door at the Ronald McDonald House, where they have been staying on and off since the bone-marrow transplant.
When asked how she is coping with the stress of a sick child, she says: “As bad as it sounds, this is our normal.”
She and her husband do their best to stay positive, for both Braydan and his little brother.
“We make it work,” said Faulkner.
“At the beginning it was really tough. Everyday it was something new and you wanted to break down, but we realize we have to be as strong as we can for him, because he senses everything," she said. "We still laugh and everything and try to make the best of everything, but it is difficult.”
Steven has two other children, Jenelle and Silus, aged seven and five, who also come down for visits on holidays.
The plan for now is to get Braydan into the rehabilitation centre, but no one knows when and how long he will be there.
The most frustrating part of the situation, Faulkner says, is not having any answers on what the future holds.
“We may not ever have answers. He has had genetic testing done ... but nothing points to anything, so we may never have answers as to what’s going on,” she said. “We don’t know where he will end up, if it will get worse, if it will get better.”
A few weeks ago, Faulkner’s mother, Wendy Warner Faulkner, started a GoFundMe page for Braydan to help with his future treatments and rehabilitation, as well as accommodations for Kayla and Caleb at the Ronald McDonald House.
“We don’t know what we will need for him,” explained Faulkner about the future for Braydan.
Anyone looking to donate can visit the fundraising page here.
Since October, Faulkner says Braydan has gotten better, but is sedated a lot of the time on a morphine drip and takes a “concoction of meds” to help with the discomfort.
“We still have a very long road ahead.”
