Remembering Oliver

By Ashley, HIE loss mom

Following a beautiful, healthy pregnancy, I went into labour on the morning of December 7th, 2019. I woke up at about 5:30 am having some light contractions. I stayed in bed until about 7 am.

When we got out of bed, we made raspberry pancakes for breakfast – something I had been craving. Danyel had planned to do his usual Saturday morning sword training from 9-10 am. At around 8-8:30, things started ramping up. My contractions were getting stronger and closer together. However, the same thing had happened a few days prior so I was convinced this was a “false alarm” and I downplayed my symptoms and sent Danyel off to his training – he needed the exercise to clear his mind. I just told him to keep his phone close, just in case.

 

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Hope for HIE Announces Formation of Medical Advisory Board

Hope for HIE has assembled a multidisciplinary board to provide insight, scientific direction, and expertise to the Foundation from leading academic and medical institutions around the world. The members of the Medical Advisory Board are recognized experts in treating patients, and leading research on HIE, hypoxic ischemic encephalopathy, a type of brain injury that affects roughly 2-3 per 1,000 live births. 

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Hope for HIE's Statement on COVID-19

We know now is a difficult time for all as we try to navigate through the COVID-19 pandemic. As we serve a global community, we want to share some insight, guidance, and reassurance to our families.

We have heard from many of you that you are anxious, nervous and scared. We know you have questions about how to get through this time. That is why we have reached out to some of the most knowledgeable clinicians in the world, who also happen to serve on our Medical Advisory Board, to ask your questions.

First and foremost, listen to your local authorities regarding social distancing measures and other important guidelines. Many in our community already do this for their at-risk children, and it is important now more than ever to heed this advice.

 

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The race for answers is a marathon, not a sprint

By Debra Curran

Contributing writer

Waiting. Watching. Hoping. Waiting some more. Watching. Waiting. Hoping.

That’s what this HIE journey is all about. And it’s what makes it so damn hard.

One day, you’re minding your own business enjoying your life with your head in the clouds, and the next minute your world, your hopes and your dreams are shattered by your child’s hypoxic ischemic encephalopathy brain injury.

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An assistive technology geek’s dream

By Jill Uswajesdakul

A kid in a candy store. That’s the best way to describe the feeling I got walking into the vendor hall at the Assistive Technology Industry Association’s (ATIA) annual conference this January.

Stepping into this huge convention center filled with every possible piece of assistive tech hardware and/or software programs. Being surrounded by leaders in fields of AT and special education, such as Linda Burkhart, Gretchen Hanser, Caroline Musselwhite and Karen Erickson, to name just a few. Getting to choose from HUNDREDS of presentations.

In short, an assistive technology geek’s dream.

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