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Welcome to our Acute Necrotizing Encephalopathy Blog
Welcome to our group where our Acute Necrotizing Encephalopathy Community will be encourage to post stories of daily events such as proud moments, sad moments and struggles.
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Supporting Your Caregiving Spouse When You Have A Child With Special Needs
Some spouse cooperate without any hesitation or difficulty. Some caregivers would like the help but either don’t get it, are too busy/tired to ask for it or find it comes with too many conditions....
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Thanksgiving
Today is Thanksgiving, my family and I are very thankful. Although 8 months ago we didn’t know just how grateful we would be. Our journey started on March 29, 2017. I was awaken with a frantic phone...
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Put Your Big Pants On
Why is it that some medical professionals can turn me into a bumbling, incoherent bimbo? I think I am a reasonably intelligent person who normally can hold a conversation and put across my point of...
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School and Communication
We all know that feeling of banging our head against a wall. I know that I repeat myself when I communicate with the school. The main characters never change but whenever a new Educational Assistance...
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Non Meditative Meditation
Recently I had a friend over and we were discussing how our modern day is filled with rushed appointment, meetings, friend meet up and just everyday living. We naturally came to discussing meditation...
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We have been Index on Google
As we build awareness for Acute Necrotizing Encephalopathy (ANE), it’s so rewarding as you look for new medical papers to find in our search your own Website. Cheers for Volunteer Parents Awareness...
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Our Paediatrician’s Turkey– When Influenza turned into Encephalopathy
“I thought your teenager was just being a turkey”. When I asked the Paediatrician who said this comment to explain,his reply was “You know – just being a silly 13 year old exaggerating her symptoms”....
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Life after 40 dives of hyperbaric therapy
This is my daughter’s journey in 4 months. She has gone through 40 dives of hyperbaric therapy. We have seen tremendous results. We really haven’t gone for any other therapies other than HBOT since we...
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Born Like This Or Not?
I find it interesting that most asked question about my Rare Disease Child is if she’s been in her wheelchair all of her life. I find it interesting that in this politically correct society that we...
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Inequality of Accessibility
It was my husband’s birthday recently and we enjoyed a nice meal at a restaurant. The food and the service is amazing at this place……..but the accessibility is how can I say it, let say they tried...
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Life Knowning Your Child’s Genetic Make Up.
Really nervous! My daughter, who doesn’t have the disease but has the gene, has fever blisters, which she gets all the time, why after all these year we hadn’t had to prepare or take precautions,...
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Healing Thoughts
Please send healing thoughts and prayers for one of our young warrior currently in the hospital
View ArticleStem Cell Question
Hi. I am thinking about stem cell therapy and wondering if anyone used global stem cells. they seem to do alot there. Has anyone had any luck with stem cell therapy and any recommendations of where t...
View ArticleMama Worries When It’s Flu Season
So here we are, 3 days before Christmas and my princess is in bed with temperature over 39°, aching limbs, sore throat, headache, cough.. Happy Christmas. I’m sick of it. She’s sick of it. She asks why...
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Influenza B, Our Flying Monkey
Living in Canada, means that from November to April, we have flu season. For some families, this doesn’t mean much but a few missed days of school or work through out the winter but for many other...
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The Kindness of Strangers
Als een gehandicapte de stad in: Auto op gehandicaptenparkeerplaats, ondersteund als een oud beppetje, zittend op een bankje tussen de oudjes en m’n maatje opdrachten geven in de supermarkt…. Benen...
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Congratulations
Sharing a great event, life is a balance of good, not so good and bad. We need to celebrate and cherish these events. Some wonderful news…Congratulations to one of our ANE Family on the birth of a...
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Part 1 : A Mother’s Mission
Your family is not invincible. If it can happen to me, it can happen to you. As I close this year of 2017 and enter another year gone by, I’ve learned a few lessons. I hope you can sincerely read my...
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Part 2: A Mother’s Mission
Vaccination is a serious decision about personal and public health that can’t be made from fear, capitulation or following any crowd. I followed the crowd. Here it is. The time of the year has arrived...
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