My experience in writing such pieces has taught me that the facts and figures are uninteresting to the general public, it is the people that strike a cord with them.
Read more
Tag: Huntersyndrome
Ethan’s Super Duper 16th
Other parents
It was mere weeks after Ethans diagnosis (Hunter Syndrome) when I was asked to come in to speak with a[…]
Read more
Appreciation for ‘him’
There are special daddies out there. They walk with us. They stand shoulder to shoulder with doctors and specialist asking[…]
Read more
ProjectAlive.org
It started with an email. An email asking me to write a blog post for an up and coming fundraising/awareness campaign.[…]
Read moreReality check
I have been asked many times from strangers to social workers–“How do you guys deal with Ethan getting older ?”[…]
Read more
Stranger ain’t ALWAYS danger…
Before Ethan’s diagnosis, there were plenty of other diagnoses…Sensory Processing Disorder was the most recent one, in the run up[…]
Read more
Amazing May15th !!!
May the 15th is international MPS/ML awareness day. As you all know by now Ethan has Hunter Syndrome, what you[…]
Read more
Perspective
Ethan was having his usual treatment on Thursday. He had also his usual treats, practically anything he wanted, when he[…]
Read more