Huntersyndrome Archives - It’s Me & Ethan

Ethan’s Super Duper 16th

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

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

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

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

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

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

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

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