As I am immersed in writing a book, I've been paying less attention than usual to the news, but an e-mail caught my attention this week. It was from J.P. Pampena, the blind publicist-turned-Toronto mayoralty candidate who continues to be the spokesman for the family of the sick little girl known as Baby Kaylee.
Kaylee was in the headlines almost a year ago, when her parents Jason Wallace and Crystal Vitelli, went public in an enormous way (Mr. Wallace held regular news conferences outside the Hospital for Sick Children in Toronto) in a bid to win support for what was then and remains still, if only to me, a mysterious cause.
Kaylee was born with a rare, and usually lethal, genetic disorder which at first was diagnosed as Joubert syndrome and which, according to the family Facebook page, later as Meckel-Gruber syndrome, cousins of the same family of diseases.
Back then, with the baby expected to die imminently, Mr. Wallace arbitrarily decided that his daughter would provide a new heart for another ill baby whose parents the family had met at the hospital.
This was contrary to virtually every protocol of the complex organ donor protocol - prospective donors, or the parents of donors, don't get to handpick recipients, let alone make the announcement to the world with themselves cast in the role of gallant saviour.
But Mr. Wallace persisted and, about this time last year, was lobbying for Kaylee to be taken off life support so the transplant could go ahead (it didn't, when the baby had the bad manners to breathe on her own when taken off the machines).
In the messy story that unravelled afterwards, Mr. Wallace turned out to be a troubled fellow (he admitted to a significant criminal record, that fall pleaded guilty to being an accessory after the fact to assault and robbery, and was then also contesting his fatherhood of a six-year-old boy by another woman) and soon he and Ms. Vitelli, Kaylee with them, went off to Bradford, Ont. to live their lives, mostly out of the limelight.
This week, according to a series of releases from Mr. Pampena, Kaylee was rushed to her local hospital after suffering a seizure, transferred to Sick Kids again, taken off life support "without her parents' consent," with the parents allegedly "banned" by the hospital from being at their daughter's side.
"The family is very distraught," one of these releases says, "and is pleading with the doctors to turn the respirator back on as Baby Kaylee is struggling for her life."
To illustrate the gravity of the baby's struggle, Ms. Vitelli thoughtfully has posted two videos on the Prayers and Support for Baby Kaylee and Family Facebook wall. One is 24 seconds long, one 14. They both show Kaylee, now just a little more than a year old, clad in a diaper, her small chest heaving as she gasps, squeaks and wheezes for breath.
The videos are difficult to watch, or, as Ms. Vitelli said on Facebook, "This is very upsetting."
Well, what I find every bit as distressing is that a parent (Ms. Vitelli, according to the site, posted the videos, but who took them is not clear) would have the capacity to sufficiently separate her or himself from the suffering of flesh-and-blood to turn on the old camera and video the scene, never mind post it, with the upside-down unhappy face icon, on a public site for all to see. It constitutes the grossest violation of Kaylee's privacy that I can imagine.
(Interestingly, the family has not given the hospital permission to release any information about Kaylee's condition or anything else. Given that Ms. Vitelli, who is pregnant with the couple's second child and due next month, posted what according to Mr. Pampena may be the baby's last breaths, this is absurd.)
Now my hunch is - and it must remain a hunch, because of the de facto gag on the hospital - that the videotaping may have played a part in the parents either being barred from Kaylee's bedside or having their access to her limited.
Family, friends and Facebook supporters would cast all of this - the battle first to remove Kaylee from life support and now to put her on it, the criticisms of the hospital, the publicity-seeking - as part and parcel of the parents' noble struggle for their child. As one person said on the wall, "Keep on fighting hunni, I know u can make it threw this."
A long, long time ago, when dinosaurs roamed the Earth and there was no social media, my then-husband and I were with my father when, over the course of about a day and a half in hospital, he died. We sang to him, held his hand, put cold cloths on his brow and swabbed his mouth; he smiled, squeezed our hands, knew we were there and heard our voices.
That is what I wish for Baby Kaylee, that if as Mr. Pampena has warned these are her final days, she is comforted by kindness, touched, held and loved and sung to - not filmed. How awful it is that I have more confidence that the Sick Kids' staff can provide this than her own parents.
Update: Globe readers have responded magnificently to the Friends of Veterans Canada, a charity I wrote about last Saturday. The group, headed by Randy Young, offered prizes for their "Video a Veteran" contest last fall, wherein students were invited to make mini-documentaries of the veteran who visited their school on Remembrance Day, with the veterans themselves winning trips to the Netherlands for a final thank you to their country's liberators. But the group's benefactor, a veteran who had offered to pay for the whole shebang, died several weeks ago, leaving the promised trips up in the air.
Thanks to the paper's readers, who either saw the ads arranged by Globe publisher Phillip Crawley or read my column, the group has raised at last count about $42,000 of the needed $75,000 (the trip cost is $3,000 per veteran, but the group has to first fly the boys in to Toronto from across the country).
Anyone giving at least $100 will receive a copy of a book written by Harry Watts, a delightful man and dispatch rider during the war, as a gift. You can donate via credit card directly on the site (www.friendsofveteranscanada.ca) or get information there where to send a cheque.
Thanks to all of you, and to Mr. Young and Mr. Watts for their work. I'll keep you posted. The veterans leave April 27.