Thanks to some AMAZING leg work from my good friend (next best thing to a sister) Amanda Fox, the media in the region are suddenly lining up to run her story! Amanda, we can't thank you enough for working so hard getting Leah's story out to the community at large.
Here is the media "blitz" lineup so far!
Monday's Tribune page A3 - awesome story about Leah!
St. Catharines Standard coming Monday afternoon to do interview and pictures
610CKTB - on air telephone interview at 1130am on Tuesday morning
Niagara This Week interview and pictures Tuesday afternoon
CHCH contacting us Tuesday or Wednesday!
I will be sure to post the links to the stories as I find them.
Thanks to the article in the newspaper this morning, Leah's campaign has already received online donations from people as far away as Ottawa!
As well, I had a very informative phone call from a Welland woman who has been through all the same struggles as Leah while she looked for a diagnosis and finally found it! I walked away from that phone call not only with lots of information, but with hope as well.
Happy to help. Love all ya!!
ReplyDeleteI read about Leah on the St.Catharines Standard website today and came by to read some more about her story. Have any of the Drs thought to look into Muscular dystrophy? More specifically Limb-girdle muscular dystrophy? It's horrible when you're sick and just want answers but it's even worse when it's your child. All the best to Leah at the Mayo Clinic! I hope you all get some answers soon!
ReplyDeleteHi Tara, thanks for taking the time to comment! Yes, that is one of the things they have already ruled out. Actually, more specifically, the "Muscle Specialist" ruled out any type of muscle disease based on some testing that he did.
DeleteThanks for your good wishes too!
HI, I have never joined a blog groug ever, but felt compelled to do so about your daughter Leah's symptoms.. I have a 6 year old neice who was diagnosed last year at McMaster Hospital in Hamilton with Narcolepsy and Cataplexy... Her symptoms sound so similar.. She was having trouble standing up sometimes, even speaking and they thought that she had a brain tumour or epilepsy or something.. It turns out that an uncle of my sister-in-law actually has narcolepsy.. The cataplexy is the "side effect" that she has from not enough sleep. No matter how much sleep that she gets.. She has an EA at school to stay with her every day so that she can attend.. I am not sure if you have visited this route yet, but I just felt compelled to contact you on the off chance that this has not been totally ruled out.. I believe that a genetic test was done to confirm the diagnosis.. If you would like any more info on this I would be more than happy to help.. There are only 2 children under 10 in Ontario diagnosed with Narcolepsy.. It normally comes out in the teenage years.. It is brought on by an autoimmune issue.. My niece had a very bad case of pneumonia when she was 5 about 7 weeks before the symptoms started to show.. No matter.. I hope that you are able to get a proper diagnosis soon , and move on to whatever the next step is.. Good Luck.. Deb Hebert
ReplyDeleteHi Deb, thanks for sharing your story. Her neurologist at McMaster had actually said to us he would be flabbergasted if it turned out NOT to be Narcolepsy with Cataplexy - maybe he had your niece in mind! But the genetic testing and the testing done via a sleep specialist ruled it out. It is good the hear that your niece got a diagnosis and getting the help at school that she requires!
ReplyDeleteHI Kate,, thanks for finding the time to reply to me.. My niece Makenna had both the sleep study and the genetic testing done and thank goodness it did bring out a diagnosis.. Their lives have never been the same since, trying to figure out how to cope and do the best they can for Makenna.. Narcolepsy has no cure and the Cataplexy can be difficult, but we are all just trying to treat her as normally as possible to avoid her standing out in any way.. They have bought her a large stroller for when they go out and she is on ritalin right now to try to keep her awake when she is supposed to be.. For the first year she was actually on prozac , but it did not help her, so it was discontinued.. Last Saturday they organized a fund raising walk for Narcolepsy in Grimsby in honour of Makenna and all of the others who have it.. I really hope that when you go to the Mayo Clinic they can give you some much needed answers to your many questions.. Best of luck to you Kate.. I will continue to follow your story and hope that Leah can finally get a proper diagnosis.. Take Care
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