This has nothing to do with privacy, but I'm trying to get the word out as widely as I can.
Many in Atlantic Canada may recall hearing about Zachery Hall in the newspapers and on the regional television news some time ago. Zachery was a little boy who suffered from the disease Adrenoleukodystrophy (ALD) [http://en.wikipedia.org/wiki/Adrenoleukodystrophy]. It is a very rare disease in which the body's myelin is progressively destroyed by a mechanism that is not well understood. (Myelin is the insulation for our body's nerve cells.) The disease causes progressive deterioration of the nervous system, leading to failure to develop, seizures, loss of coordination, then blindness, deafness, dementia and ultimately death.
Members of the community were very generous to support Zachery's family while he was undergoing treatment. Our support also helped him to go to Disneyland with his family while he was still able to enjoy it. Zachery Hall died in 2006 at age 10.
Zachery's little brother, Bretton, has been diagnosed with the same horrendous disease. They have been able to identify it at a much earlier stage than Zachery's and are hopeful that earlier treatment may be able to provide him with a longer life with greater quality of life.
Bretton's family is not well off to begin with. He will be receiving very long and expensive treatments in Ontario. We hope to be able to assist the family with their expenses in this.
Bretton's aunt and I have set up a trust account at ScotiaBank to assist the family. We hope to be able to help with his treatments, assist with his quality of life and to help the family in what is a devastatingly difficult time. The community has been very generous in the past and I'm hopeful that we may be able to help this family in our community. If you are able to make a donation, please let us know. You can send a cheque to either of us, payable to “Jo Anne Conrod and David Fraser in Trust”, or you can make a deposit at any Scotiabank Branch (Name: Jo-Anne Conrod & David T. Fraser (In Trust for Bretton Kinslow) / Act#: 700030255629 / Transit#: 70003).
c/o McInnes Cooper
1300-1969 Upper Water Street
PO Box 730
Halifax, NS B3J 2V1
c/o St. Matthew’s United Church
1479 Barrington Street
Halifax, NS B3J 1Z2
Donations are gratefully received through the account shown above, or via PayPal.
From today's Halifax Daily News:
Not unlike other boys his age, six-year-old Bretton Kinslow spent a good chunk of time before bed last night jumping off the couch, trying out new wrestling moves and practising tricks on his skateboard.
Unlike other boys his age, Bretton and his family are standing by at their Hatchet Lake home for a call from Sick Kids Hospital in Toronto with the news that there's a stem-cell match for the grade primary student.
On Nov. 8, Bretton was diagnosed with the same genetic disease that killed his brother Zachery Hall just last year at the age of 10.
Adrenoleukodystrophy or ALD - a rare disease that was depicted in the 1992 film Lorenzo's Oil - causes damage to the myelin sheath that insulates the nerve cells in the brain.
The most common type of ALD is linked to the x-chromosome and, with only one x-chromosome, men are more severely affected.
Young boys are the most common victims of the disease, which causes progressive deterioration of the nervous system leading to loss of co-ordination, blindness, deafness, dementia and, ultimately, death.
By the time doctors realized what was wrong with Zach, his mother Lisa Kinslow said, it was too late.
But after he became sick, the IWK kept a close eye on Bretton.
"They monitored Bretton every six months," Kinslow said.
At the last six-month checkup, it was confirmed Bretton had developed ALD.
He's now on the list for a bone- marrow transplant, which is conducted using the stem cells from an umbilical cord.
With the transplant, every cell in Bretton's body will be renewed, hopefully staving off the deterioration of his nervous system.
"He won't even have the same blood type anymore," Kinslow said.
While Bretton bounced himself off the couch, showing off for the photographer, Kinslow and her husband Mark explained there are no guarantees the transplant will save Bretton, but he has a better chance than his older brother, who was diagnosed too late.
"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 going to Toronto for the doctors to make him better; he knows he'll have to take a lot of medication; and because of chemo-therapy before the transplant, he knows he'll probably lose his hair.
"I don't want to be bald," he said at one point last night, grinning and rubbing his head.
Kinslow admitted it's been a rough go for the family.
She's trying to keep it together for Bretton and trying not to let his illness become the focus.
"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."
Bretton's aunt, Jo-Anne Conrod, and family lawyer David Fraser with McInnes Cooper have set up a trust fund for Bretton and his family to help get them through their time in Toronto and future challenges.
Donations can be deposited at any Scotiabank branch under the name Jo-Anne Conrod and David T. Fraser (In Trust for Bretton Kinslow/Acct. # 700030255629/ Transit #70003)