14-year-old Cambridge girl desperately needs double lung transplant

The London Transplant Gift of Life Association drew my attention to the plight of this girl, who has been in hospital since mid-March. Her lungs are failing and only a machine is keeping her alive.

She has been on a waiting list for quite some time.

For more information about Kayla, click this link:

http://www.torchoflife.com/kaylas-wish.php

April is also Organ Transplant Month. The Trillium Gift of Life Network site reveals that almost 1,400 people in Ontario are waiting for a transplant.

If you’d like more information about donating, visit

https://beadonor.ca

Please pass this along on Facebook or Twitter or reblog to draw attention to Kayla’s need.

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42 thoughts on “14-year-old Cambridge girl desperately needs double lung transplant

  1. It’s hard to understand how it has taken the Ontario government so long to advertise this Registry,
    around for at least 15 years. That “Sign your donor card” slogan is still around, even repeated by
    media, although they have been obsolete for years with the introduction of the internet.
    Still some confusion about what it does – it does not guarantee your offer will be taken up. only that
    your personal request wil be added to the pool of potential donors available to patients such as this
    patient. Important also to think things through if one is suddenly asked to approve harvesting of an
    unregistered person, such as someone under 16 and not eligible to sign on. This may well apply to the
    child chosen for publicity.
    This gir’s wait is nothing over which we have control, but we can all look up the Registry site and chose
    an option for future guidance of kin, if authorities make such a request. Many are called, few are chosen.

    • Thankyou , I’m with you on this it is Very Hard to understand Why the Ontario Government has taken so Long to Advertise this registry~! As far as rules & regulations here it sounds like some long overdue alterations are in order here ~! #1 we are talking about only Our Donor Cards here~! There are Live potential donors out there & they too should be seriously considered ~! Medical testing for appropriate matches could be done ,imediately ~!! Say for Example a Live Donor wanted to donate One Kidney One Lung they would like to donate to say a child or children used in the Media for publicity or in Sick childrens Hospopitals everywhere to raise the Awareness they are in actual need of Organ Donation ~! If this donor in fact taken seriously ,could they come forward for testing ? Why would Our Medical Society not approve ,all testing of Live donors .. I mean they could start with Family Testing of course ,first but also potential Live donors could be tested at the same time ~ would possibly prevent such Long Very Gruelling waits on donor waiting lists Patients affected with such Life threatening challenges & the Families having to watch thier families faiiing would indeed have more options & More chances in matches~! ~! In fact maybe the Organ Donor cards should have this option for anyone wishing to be a Live Donor~ to sign ! Just a Thought~!

  2. You do need to let current responsible kin, particularly in other provinces, know your feelings on the
    subject and learn their including those underaged, but the big thing about the Registry is the that the information is available for reference by all, coded on one’s green photo card, andupdated with each renewal. There can be no argument years from now about what ‘Mother Wished’ if memories differ, or
    if close family are thinking of imposing different views on how a deceased body should be treated if
    authorities ask about harvesting. Any data on in how many Ontario cases permission is refused and
    why?

  3. That website gives an image of an old Trillium card, which many have never seen anyhow.
    What about an image of the reverse of an OHIP Card, showing how it is coded ? Amazing
    how many staff at hospitals do not look at the reverse, some even unaware of the coding
    opportunity. We need to make the coded card image more recognizable. Can you display
    yours or shall I send along an image of my 9Z one. (OHIP no longer puts cardholder name
    and addresson the back,which was an infringe real infringement of privacy and invitation
    to fraud…)

  4. Lots of articles on relatives refusing to donate organs of loved ones but very little information about organs being refused by the medical community. Would like to see Ontario stats on this question.

  5. At the London Health Sciences Centre, there were 14 deceased this calendar year compared to only four last year.
    Does that mean a lot of organs were not accepted by the hospital or just not a lot of people willing to donate?

  6. Some confusion in the marketing – nationally it’s ‘National Organ and Tissue Donation Awareness Week April 21-28, 2013’. The Ontario appointed group is promoting a month and suggest supportive bake sales and block parties…My impression is that media are encouraged to dwell on negative guilt-giving heartstring tugging instead of hard facts about this important subject. The deaths might have been because there was no matching material identified for authorities to request, or that transplant was done and failed, not that significant kin blocked the deceased’s intentions or none had been expressed. My understandingisOntario’s Power of Attorney for Personal Care, now 2 decades old, would identify whose views were prioritized, and that the Executor/Trustee is legally “owner” of the body. Kin can well be named to these roles, so it is not necessarily a conflict situation. There maybe religious reasons for deceased and survivors not wanting to permit this intrusion into the remains and this must be respected in a free society.
    Glad you brought the subject up Kathy, and perhaps you can get more light shed on what the donation supply problems are. Just telling us of need doesn’t get the public anywhere unless we are in the tiny group affected right now.

  7. Found an interesting piece by Paul Flaman at the University of Alberta titled Organ and Tissue Transplants: Some Ethical Issues.
    I’ve pulled out what he writes about media coverage.
    “Sometimes an organ or tissue is procured for a person by publicizing their need through the media. This could bypass the regular transplant channels and their selecting recipients for an available organ on the basis of greatest need and greatest likelihood of benefit, and first come first serve (see 3.a above). On the other hand, media pleas frequently bring in more volunteers than those required for the case being publicized. Media publicity also increases public awareness of the need for transplants and so in the long run should increase the supply of donated tissues and organs. Garrett et al. argue that at this stage of medical history media publicity for a particular case should be tolerated, but in time it should be eliminated as much as possible.(212)”
    Here is the report at the link below. It is from some time ago but worth a look to see if we’ve made progress.
    http://www.ualberta.ca/~pflaman/organtr.htm

  8. Media help is essential to supporting this worthy cause, but they have done poorly in giving public the facts so far as I’ve followed the issue for years in Toronto and local media. Some still pushing ‘Sign a donor card’ until very recently, suggesting staff themselves aren’t likely to be Registering themselves as possible Ontario donation sources.
    The article is 1994, Province of Alberta, interesting emerging issues, not necessary reflective of Ontario’s rules as evolved. Not clear if the Kayla campaign is expected to locate an “appropriate” death amongst those unRegistered or Registerable,under 16, intended to jump the line, but unlikely if it is being promoted by a provincial taxfunded body.
    Did you notice that even when they show images of the OHIP Green card, it is always the front side, which is irrelevant – any Donor wishes are recorded on the reverse…
    Our Registry program is mature enough there should be data on matches made, successful and unsuccessful, failure of responsible kin to endorse harvesting according to victim’s known wishes, or where none are were known, and the issue is these third party positions on the topic.
    Look around – are any of you in a position where you could be consulted in the near future if a request is made to harvest a suddenly dying or dead individual for a “Match’? Are you comfortable with the idea and if you were the victim,
    how would you want your responsible person to act. Remember we are not talking about full “body donation to science” which eliminates organ/tissue gifting.

  9. Don CherryVerified account ‏@CoachsCornerCBC 15 Mar 13
    12. By signing a donor card or making a donation because you never know, god for bid, what happened to my family could happen to yours.

  10. By: Stuart Laidlaw Faith and Ethics Reporter, Published on Thu Sep 17 2009
    Toronto
    “With Ramadan ending in the coming days, Imam Habeeb Alli is making a special point of what he calls the greatest act of charity a Muslim can make during this holy month – signing an organ donor card…’

  11. The Ontario organ donor registry has been around for less than two years. It is connected to your health card so that a database can be accessed to know your wishes. If you have let your family know your wishes either through talking to them or registering, 9 out of 10 times they will say yes to donation. If they are unsure, they will only agree 5 out of 10 times. Not all deaths qualify for organ donation but everyone can be a tissue donor. I have had the opportunity to meet Kayla and she is an amazing girl and a real fighter. She continues to share her story to bring awareness not only to her wait for lungs but the many others that are the waiting list.

  12. There’s some confusion about the Ontario Registry. I first signed up in 1997, over a decade ago, and
    it was encoded on my new OHIP green photo card, and I repeat the request each time I renew the card.
    Status 9Z on the application form. It’s appalling how few in line at the OHIP office even know of the
    possibility of putting their intentions here, not just a driver’s licence or on the oldfashioned wallet card.
    A problem re informing, loosely, one’s “family” is one can’t know who’llbe the effective Next-kin when
    one is on one’s deathbed and authorities are looking at the patient’s “Donor”-worthiness. Future spouses
    for example, not-yet-born children.
    More focus needs to be on the Registry in our Province, where you can speak for yourself. As Ontarians
    under-16 cannot register their willingness to be harvested if dying prematurely, there is value in someone
    in the demographic reminding them they too could be in need.
    My ongoing complaint is that we have too little information about the Registry – we don’t even agree on
    when it became available – and almost nothing about its over a decade results in matching Donor to Recipient, successful and failed cases. As this province seems low in Registrants, it may be it needs to take a different
    approach to informing the public of how they can record their intentions for the future, not just rely on
    the memories of various relatives. Getting it in writing, instantly available to authorities is the only way to
    make the system work.
    One’s tissues may offered, but are there any stats on how often this will actually be requested and done?
    And there are only certain conditions under which one’s obviously dying body is evaluated for donor capacity. In a hospital, and of certain causes, right ?
    It is great that Kathy again is providing space for this dialogue, essential to Kayla’s cause…

  13. -google ” Organ and Tissue Donation and Transplantation – Auditor General of Ontario .. .
    http://www.auditor.on.ca/en/report..”, for a lengthy analysis to 2010. Lots of players besides you and me,
    100 staff at decade old Trillium co-ordinating agency itself, hospitals capable etc.
    Once the pool of willing citizen donors is popularized, making a match with various agencies involved is
    complex… it’s not like shopping from a catalogue online.
    But what every over-16 Ontarian can do in Kayla’s name, is step up to the plate by Registering, then
    sending an dated image of the Coded reverse of your green photo card – or a Registry-stickered old
    red and white card to your own nearest kin for reference if the Bell tolls for thee..Ask them to respond
    with their thoughts, even information about using their own provincial programs.
    -Maybe we should be asking people to send Kayla and her parent and siblings, photo images of the Coded
    reverse of their own cards. This seems secure as it does not reveal the number of one’s account, nor give
    your name..Wonder how many she could collect this month as Get well cards with a punch…

  14. I think that’s a great idea about sending photo images of our cards to Kayla. Let’s look into this.
    I had to get my health card renewed last month and I asked ministry staff to ensure I was a registered donor. They looked on the computer and confirmed I am. I registered quite some time on my health card. The first renewal after I registered didn’t show me as a donor so I went through the process again. Now I pleased the bugs seemed to have been worked out.

  15. Prior to two years ago, there was no registry. You wishes were put on the back of your health card but the data wasn’t kept in a centralized database. That is why you needed to be asked each year. Now, that information has been transferred to a centralized database that can be accessed at the time it is needed. My daughter’s story was featured as part of the database launch two years ago and we were at the official launch with Deb Matthews so I have some knowledge on this. I think rather than sending Kayla pictures of the health cards of people that are already registered as donors, we would somehow want to show her the new people who are going to beadonor.ca and registering because of hearing her story. I believe this is her Gift of 8 registration page: https://beadonor.ca/kayla We could encourage people to register through her page. Or letting her know on the facebook page: https://www.facebook.com/groups/454256227926613/

  16. Kathy – surely the word we should be highlighting is OHIP “Registered”,,
    Who knows if we ourselves will ever be selected by authorities on the spot as to finalize the pledge.
    If I’d actually Donated, my remains most likely would be in my grave.
    (Running around the block in Awareness promotions is fun and media good photo ops , but it’is the
    coded OHIP card that can help needy people like the Cambridge teen..are runners over 16 required to show they have Registered ?
    Looking forward for Joanna’s opinion

  17. Perhaps we should just say we are on the organ donor registry. OHIP registered may also confuse.
    I joined Kayla’s Facebook group and she has almost 4,000 members. A growing list will give her encouragement.

  18. Heavens I certainly got the impression that my choice was recorded with the Ministry and would be honoured
    at London hospitals were I to be dying there, and copied the image of tecard to relevant relatives in good faith,
    particularly my PAs for Personal Care..
    (I wasn’t asked by anyone each year, renewal has been tied to the 3 year life of my Green photo OHIP card.
    Perhaps this new electronic database just linked to others now, maybe to professionals nationally which is not
    my problem.I can only encourage others by demonstrating I’ve already chosen to be an Registered Organ donor in Ontario (Is that better Kathy?) and feel good about it.
    I don’t use Facebook so the greeting card approach is all I could help with. It is up to the new Signers to tell her, so she knows it’s not just idle chat but increasing the odds of a match.
    What I may do after all this discussion is wear Trillium’s green ribbon symbol to a hospital appointment to demonstrate I have signed up myself, and maybe get some chat going.
    Will look up the announcement in the time of your close connection.
    Regards

  19. This is what I found and, as I had to go to the office to renew my card so it wasn’t a problem.
    “Previously, Ontarians could only register as organ and tissue donors in person at a ServiceOntario centre or
    by downloading, completing and mailing a Gift of Life Consent Form.”
    They weren’t called ServiceOntario centres back then, and one only had to use a computer and andprinter and find a stamp to “connect” with the Ministry.

  20. Offer of Organs,
    I’ve put the blog link on the Facebook page so Kayla and family and friends can see post and comments.
    You and I have signed up quite some time ago so nice to know we have the best chance of our wishes being carried out.
    Registered organ donor in Ontario works!

  21. Glad you’ve put your blog link over there for more input. Response should be interesting.
    But the date when one Registered has nothing to do being harvested surely ?– it will be the timing and place of our deaths, the condition of our bits and pieces, and the current wait list of needy patients hoping
    for medical matches.
    I dont mind if my ‘wishes’ can’t be carried out at the end, just that I did my best to make useful body parts available to someone in urgent need and my significant others were happy with my choice.

    • Offer of Organs,
      Sorry for confusion on wording. What I meant was with the two-year-old registry up and running and coordinated, and with my recent check to see if indeed I was on the list, it means there should be no confusion about our wishes and therefore a better chance of being a potential donor when the time comes.
      10 years ago, even though we registered through OHIP, would the message have gotten through to the medical community in the event of our demise?
      I feel much more secure now that my wishes are indeed known. And of course my family has also known for some time.

      • Kathy, re making one’s Wishes known to relevant authorities..
        These seems secondary to them looking at one as a terminally ill patient and deciding his/her body offers
        “Harvesting” possibilities. Not all do, in fact this situation is in the minority.
        Only then would they have to consider approaching the relevant relatives, ask if they knew the dying person’s
        thoughts on this and, if pro-Donating, will they would endorse that by consenting to procedures?
        “Be a Donor” to me is misleading marketing, suggesting to people have a right to pass on body parts to others.
        This isn’t the Goodwill, this atmosphere can raise people’s anxiety – will my loved ones let me down at the end?
        -We need to hear more of the process so we can picture our own family groups in the position of the young person
        somewhere on the information network and his/her family, who chose about midnight Tuesday to release parts
        of the body of their dying young person so waiting others could have a better chance of life, Kayla of Cambridge
        being one early yesterday. Perhaps this was all at Sick Children, or spanning many miles.
        So while her town celebrates, somewhere another community is in mourning for someone young person whose pivotable role in this is to remain unknown.
        This’s just an outsider’s view after following the possibilities since the first December 1967 with the news
        out of South Africa re a heart transplant.
        Ontario’s transplant stats are low, and perhaps we need better, more realistic education on how it works and how
        it could affect many of us some day, as donor potential or as authorative kin. What are the pre-conditions, a
        hospital death vs. a home one? What diseases exclude one, etc etc.
        My guess is that parents who’ve thought it through and signed on our Ontario Registry are better prepared if a member of their own family is identified as a possible Giver, perhaps under really traumatic circumstances, and can more easily make the decision to let the doctors go ahead trying to help another suffering patient somewhere.

  22. Thanks to Kathy as always for supporting this health issue! And I love to see those green ribbons! These kinds of conversations bring a focus to the importance of registering and talking to your family. Of the almost 1500 people in Ontario waiting for organs, 36 are children, many of whose families I have the chance to know and it always tugs on my heart strings because we were there waiting just over 7 years ago. I’ve worked with a number of donor families and they all take comfort from knowing that something good came from their loved ones passing. Hopefully more families will continue to make this choice and save lives like Kayla’s.

  23. Kathy, you probably want to wrap this up now, but I draw your attention to an Andre Picard article in
    the Globe and Mail today L6 re hospitals lax in “procuring” organs, a complex process.
    Yet it ends accusing the sick people of this country of producing one of the lowest rates in the developed
    world – 15 per million. This wording, pinpointing volunteer Donor side of the equation – as if we controlled who is chosen – reads as if the public is solely at fault, when all we can do is record our willingness to be re-used, and consent to this re dying significant others if consulted.
    This scorekeeping should include transplants achievedrie Recipients, and kin refusals regardless of
    whether the dying person was known has expressed an opinion.
    So much focus on wicked persons refusing family consent, yet no data on this reaction.

  24. Can we assume the now-deceased giver of the needed organ was someone who’d already Registered
    with the Ontario program? Or can authorities reveal if the donor was under aged, and his/her family
    alone had to express presumed wishes of the lost one?
    The topic for the Mmonth is encouragement of Registering in Ontario..
    -Great news for this young lady, and sad thoughts for the generous bereaved family behind the scenes.

    • No details can be shared about the donor but Kayla needed small lungs so it was likely someone under 16 and the parents would have made the decision.

  25. I received my renewed health card in the mail this week. With it was a card asking me to register my consent to donate my organs at BeADonor.ca. I assume everyone gets this card, whether they have already registered or not.
    It says that as a donor, you can save up to eight lives and enhance as many as 75 more.

  26. Isn’t your new green photo card coded on the back with the category of Donation you have chosen ?
    If so, they might be doing that as a promotion gimmick for you to show to someone else to encourage
    them to register.
    They still sound as if one can donate just by signing up, whereas it is complex and very few people
    actually have their offer taken up. Really misleading , saying “can” instead of “may”.

    I

  27. Kathy, google this PDF] Organ Donation and Transplantation in Canada
    http://www.parl.gc.ca/Content/LOP/ResearchPublications/2011-113-e.pdf

    It deals with information that the public needs to understand if they are to be asked to offer
    to be “harvested”.
    Another website breaks it down to potential donors (registered); probable donors (body seems
    to offer transplant material): actual donors (where a match is made and carried out).

  28. Great link Offer of Organs. So we are considered mediocre in Canada in our organ donor rate. I liked the idea of providing information to Canadians on income tax or census forms.

  29. My point is it’s not clear what ‘Donor Rate’ means. The efficiency of the Registry system in alerting
    transplant authorities of a dying/dead person’s willingness to be harvested ? The efficiency of transplant
    authorities in pursuing this and finding a quick match (not detail that a general registry could include) ?
    Or the completion rate of transplants – and some indication of the success rates.
    Let’s not confuse Registry promotion “awareness” techniques and achieving public understanding of this
    complex medical move forward. I tend to resent the accusatory tone against the public – we can’t exactly die on demand.
    I

  30. Can you believe it – the Free Press today
    has a “poll” asking if people have signed their
    drivers’ licences to be an organ donor.
    Does a drivers licence even have a space
    for drivers to sign a Consent ?
    Why are media generally so far behind on
    this issue -do few of them even bother to
    sign up themselves and have eligible family
    members do so too so don’t understand how
    the system has evolved since the internet
    came in
    Awareness material about of the need for transplant
    material is everywhere now.
    What needs support from media now is accurate
    information about the Ontario Registry, where
    one’s one’s intentions are encoded on the reverse
    of one’s OHIP card.
    It’s so frustrating for those of us who have long
    been registered in this province that decent
    how-to information is not being published
    to help enlarge the pool of potential donors.
    No point in telling us about the need if they
    don’t tell us what Ontarians can do to help fill
    it.

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