ANOTHER AWARENESS DAY -MAY 15TH
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.
Tag: Huntersyndrome
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 still does. When I see my friends son, who is the same age, I can’t help but wonder what my […]
Other parents
It was mere weeks after Ethans diagnosis (Hunter Syndrome) when I was asked to come in to speak with a genetic counsellor and to have my bloods taken. My blood test would determine whether or not I had given Ethan a rare […]
Appreciation for ‘him’
There are special daddies out there. They walk with us. They stand shoulder to shoulder with doctors and specialist asking the hard questions. They take our hands and remind us “We will be ok” and somehow, we believe them. They talk. They […]
ProjectAlive.org
It started with an email. An email asking me to write a blog post for an up and coming fundraising/awareness campaign. As I wrote the blog, tears fell down my face. This was my life. This was my reality, stripped bear for the […]
Reality check
I have been asked many times from strangers to social workers–“How do you guys deal with Ethan getting older ?” Here is a very honest answer. Ethan had a birthday this past week. A milestone birthday. A birthday that marks so much […]
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 to Christmas 2007. It was Christmas week. The atmosphere in our City of Galway was magical. The boys were anticipating the arrival […]
Amazing May15th !!!
May the 15th is international MPS/ML awareness day. As you all know by now Ethan has Hunter Syndrome, what you may not have known is that Hunter Syndrome is also known as MPS type 2. This is a very special day for […]
Perspective
Ethan was having his usual treatment on Thursday. He had also his usual treats, practically anything he wanted, when he wanted it. If ya can’t spoil a kid who endures as much as Ethan, once a week, then whats the point eh?! […]
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Tagged Huntersyndrome, MPS