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It’s Me & Ethan

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Tag: Huntersyndrome

Ethan’s Super Duper 16th

May 17, 2018 ger Being Irish!, Brothers, Ethan, Ethans 16th, Life

He is not like other 16 year olds and for a long time that hurt me. From time to time[…]

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Other parents

September 12, 2015 ger Ethan, fatherhood, Life, Motherhood

It was mere weeks after Ethans diagnosis (Hunter Syndrome) when I was asked to come in to speak with a[…]

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Appreciation for ‘him’

June 25, 2015 ger Ethan, fatherhood, Life, Motherhood

There are special daddies out there. They walk with us. They stand shoulder to shoulder with doctors and specialist asking[…]

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ProjectAlive.org

June 12, 2015 ger Ethan, fundraising, Life, ProjectAlive

It started with an email. An email asking me to write a blog post for an up and coming fundraising/awareness campaign.[…]

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Reality check

May 23, 2015 ger Ethan, Life, Motherhood

I have been asked many times from strangers to social workers–“How do you guys deal with Ethan getting older ?”[…]

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Stranger ain’t ALWAYS danger…

May 11, 2015 ger Ethan, Life, Motherhood

Before Ethan’s diagnosis, there were plenty of other diagnoses…Sensory Processing Disorder was the most recent one, in the run up[…]

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Amazing May15th !!!

April 29, 2015 ger Being Irish!, Ethan, Life, Motherhood

May the 15th is international MPS/ML awareness day. As you all know by now Ethan has Hunter Syndrome, what you[…]

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Perspective

April 1, 2015 ger Ethan

Ethan was having his usual treatment on Thursday. He had also his usual treats, practically anything he wanted, when he[…]

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