Practicing tricks on his skateboard and attempting new wrestling moves while jumping of his couch last night, six-year-old Bretton Kinslow is not unlike other boys his age.
But the similarities end at the activities. Bretton is waiting on news that there’s a stem-cell match for the grade school student in his family’s Hatchet Lake home. His parents sit by the phone waiting for a call from Sick Kids Hospital in Toronto.
Zachary Hall, Bretton’s brother, was killed at the age of ten last year by the same genetic disease Bretton was diagnosed with on November 8th.
Causing damage to the myelin sheath that insulates the nerve cells in the brain, Adrenoleukodystrophy or ALD is a rare disease that was depicted in the 1992 film Lorenzo’s Oil.
Men are most severely affected since the most common type of ALD is linked to the x-chromosome. And men, with only one x-chromosome, are at a disadvantage.
Leading to dementia, blindness, loss of co-ordination, deafness, and ultimately death, a progressive deterioration of the nervous system characterizes the condition. Young boys are the most common victims.
Zach’s mother Lisa Kinslow knew it was too late by the time doctors realized what was wrong.
The IWK kept a close eye on Bretton after he became sick.
“They monitored Bretton every six months,” Kinslow said.
It was confirmed Bretton had developed ALD at his last six-month checkup.
Now he is waiting for a stem cell transplant. The cells will come from either bone marrow, or a umbilical cord blood.
Hopefully staving off the deterioration of his nervous system, the transplant will renew every cell in Bretton’s body.
“He won’t even have the same blood type anymore,” Kinslow said.
Kinslow and her husband Mark explained that Bretton has a better chance than his older brother who was diagnosed too late, but that there were no guarantees that the transplant would work. Meanwhile, Bretton showed off for the photographer, bouncing on and off the couch.
“With Zach, it was different; we knew the outcome,” she said.
“With this one, we’re fighting for it.”
Kinslow said Bretton has some understanding of what’s going on.
He knows he’s probably going to lose his hair because of the chemo-therapy before transplant. He knows that he will need to take a lot of medication. And he is more than aware of the doctors that surround him, trying to make him feel better, every time he goes to Toronto.
At one point last night, grinning and rubbing his head he exclaimed, “I don’t want to be bald.”
It’s been difficult for the family admitted Kinslow.
She’s trying not to let his illness become a focus, trying to keep things normal for Bretton.
“We spend every day with him, we play with him, we talk with him,” she said.
“There’s nothing that he wants to do that we don’t try.”