Mayo Moments

Wednesday, 18 July 2012

Leah in the Media

updated to include CHCH news story

For those of you who have not yet seen the articles here are the links that I have been able to find

St. Catharines Standard

and the Niagara Falls Review ran the same story

and since I can't seem to find an online version of the story in the Tribune here is a copy (I hope it looks better on your computer than it does on my laptop screen! )

Niagara News in both St. Catharines and Welland will be printing their story in Thursday's edition.

I chatted on air with Tom McConnell on 610CKTB on Tuesday morning and we have just found out I will be chatting with the Giant FM morning show team on Thursday morning!  Good golly all this may start going to our heads.  What would my diva demands be probably something to do with chocolate, and Leah?  I think her diva-ness would show itself in requests for manicures!


  1. I wanted to write to you to offer encouragement. We also have a daughter who has similar symptoms as Leah. Our daughter was definitively diagnosed with narcolepsy with cataplexy in May 2011, at the age of 5. I know you have ruled out narcolepsy. Can I ask if they ruled it out by having a negative MSLT because we were told when our daughter had her sleep study thatchildren rarely test positive for narcolepsy on sleep study, even if the have narcolepsy.

    At any rate, our girls have VERY similar stories and symptoms and I would be very happy to connect with you via email or in person. We are local to Niagara and are "frequent visitors" to McMaster Children's Hospital. Please feel free to email me at

  2. BTW, I see my sister-in-law Deb contacted you about my daughter Makenna in the previous blog entry. It would be so great for our girls to spend time together and for us to talk about the challenges we face with school, social/play time for the girls and just getting them out and enjoying life. We also have other children and this impacts the whole family. Again, I hope you get answers about what is wrong with Leah. We were so lucky - we knew within HOURS what the working diagnosis was. I couldn't imagine if we had been sent home without answers! You are a strong family and your determination to get to a diagnosis is inspirational! God bless you and your little girl.

  3. Makky's mom, thanks for commenting! I would love to have the girls meet and for our other kids to get together - you are so right, it impacts them an awful lot and it would be good for them to meet other kids in the same position.

    Regarding your question about testing, we had sent the genetic testing away to Boston and it came back as negative.

  4. Have you looked into Lyme disease. It causes white matter changes and many of the symptoms you described on the news. The Elisa test given in Ontario is entirely unreliable. The proper test can be ordered from YOu have to have a doctor or a naturopath sign off on the requisition and you can have the blood drawn at Lifelabs.

    It is a politically charged disease, you can see "Under our Skin" a documentary that explains why. If one tests positive on this American test, you then need an American specialist to treat you.

    Most people don't know how unreliable the testing in Ontario just in case she's been tested and you moved on.

    It may be shot in the dark, but I went through 10 docs, too many tests and it turned out it to be good ole lyme disease.

    If your interested you can check out:

    I wish you the best. Having an undiagnosed disease is the the worst kind of limbo to be stuck in.

  5. HI, I commented above. I just read through your blogs and I am so amazed by you as a mother warrior. As I mentioned I went through a similar process. It took a year until diagnosis. I cannot imagine going through it with my child. My heart goes out to you and your family. I really appreciate how you still 'live' and do things and make magic in your everyday with your kids. I learned a lot from reading your blogs. Thanks