For the second year in a row, our friend Grizz Salzl put on a charity poker tournament at the Edgewater Casino, to raise funds for our MPS II Research Fund. The big game this year, was yesterday. Ry is not one for details (he wouldn’t tell me how much $ he lost, but it’s okay because if our savings are going to disappear, research for Hunter Syndrome is a good place for our savings to disappear to!), but he did say it was a blast, that the casino donated all the food for the day (people had to pay, but paid into the Fund stash, THANK YOU Edgewater!), and that overall, the tournament raised $2,000 for our MPS II Research Fund. THANK YOU Grizz for organizing this!
We are touched beyond words by everyone who joins in our plight to raise funds for research into a cure for Hunter Syndrome. Hopefully most of you will never have to know what it feels like to have a good friend raise funds for research into your child’s progressive disease, but if you do, it feels… well, like my heart is swelling or growing. To Grizz and everyone helping us with and supporting our massive Gala, thank you.
You know those ‘Chicken Soup for the Soul’ books? Inspirational stories about random acts of kindness, that kind of thing? This may not be random, but I get to be touched by those inspirational people regularly now. Although this rare disease has led to waves of unbelievable amounts of stress, the generosity and kindness of our friends, family and community has countered that. Last week a friend of a friend joined our plight. A mom whom I’ve never met or heard of before, Tiffany Haziza. And then there’s ALL of our Gala volunteers (too many to mention, how amazing is that!) who have stuck it out for monthes now, keeping with our cause through school and relationship break ups and life… This journey is definitely one of emotion. Unthinkable fear one one side and immense beauty on the other. Many people don’t want to put themselves in our shoes, understandably. Our diagnosis and journey is everyone’s nightmare. When couples are pregnant, all they want is a ‘healthy’ child. So when people like Grizz, Tiffany, our volunteers etc., can get dirty and emotional and imagine what it is like in our shoes, I am moved, to tears. Thank you to everyone willing to do this. You bring so much love into my life and make this such a wonderful life to live.
