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January 15, 2018

Between summer traveling, doctors appointments, back-to-school preps, a hurricane and the holidays - to say I have been busy the last several months would be an understatement. Much of my time has also been spent on my passion project, a BPAN Website devoted to increas...

June 13, 2017

Last night my husband witnessed Eva having a seizure. No, it was not the type of seizure most people picture when they think of a seizure (tonic-clonic – a.k.a. grand mal). Like many, pre-BPAN, I envisioned a writhing and convulsing body, violently shaking and "fo...

June 10, 2017

As an ultra-rare genetic condition, just a few key strokes on my cell phone had provided me with ample information regarding BPAN (I would later quip, unlike other medical conditions, the fact that BPAN is a rare condition, actually made it easier to filter through the...

May 13, 2017

Eva has been blessed since birth with two incredibly loving big sisters, Ella, 9 soon-to-be 10 and Emma 8. I may be biased, however for the most part they have been stellar big sisters. They adore their little Eva and shower her with affection. At times, I chuckle for...

May 2, 2017

BPAN - Beta-propeller Protein-associated Neurodegeneration - what a mouthful. WDR45? Never heard of it? Not surprising. Like the many doctors, therapists, child psychologist and specialists including two pediatric geneticists and two pediatric neurologists, with whom w...

April 18, 2017

The reality of BPAN sets in – it is no longer a foreign term. My husband can barely get through a medical summary without tearing up, whereas I am already armed with an entire binder of medical information, which I carry with me, as if all the clinical, scientific data...

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June 13, 2017

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Big Sisters, Big Grit

May 13, 2017

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© 2017 by Eva Magoo. Proudly created by Advisor Expressions

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