World Rare Disease Day 2011

It was an overcast day, and as usual during the winter months in the Midwest, dreariness set in. After clearing the breakfast plates and rushing the children out the door to catch their bus for school, I settled back into my usual Monday routine of laundry, bed making and preparing a grocery list. Of course there were bills to pay and errands to run, but with the oppressive gloominess that hovered around, there was no sense adding more work to the mix. As I pulled a load of towels out of the drier for folding, it dawned on me that I had not opened a small manila envelope that had been delivered the week prior. I meandered down the hall and took the envelope out of the basket near the front door.
It was addressed to me from The Global Genes Project. As a volunteer, I assumed it was some stickers or video that I had ordered for a class I was hoping to implement in our elementary school. I hadn’t opened it due to the fact I had been unsuccessful in executing the class and figured there was no rush in opening the package. Peering inside after I gently slit open the top of the envelope, I noticed two beautiful blue organza bags with blue ribbon closures. I pulled the bags out and began to read the accompanying note. The note was from a woman named Michelle.

The note read: February 2011 ‘I hope this bracelet shows you how many people care about you and your family even though we’ve never met’. ‘Michelle’ And another note from the Global Genes Project explaining the ‘7,000 Bracelets for Hope Campaign TM’. Tears welled up into my eyes, and I found myself bawling at the dining room table.

At first, I didn’t even understand my own reaction. Why would I be crying at such a beautiful sentiment. After all, as a volunteer for the organization, there was no surprise as to the meaning and work involved behind the campaign. Yet, reading Michelle’s note brought an overwhelming sense of care and warmth to my heart and soul. Someone else, someone who didn’t even know me or my son, my family or our issues – took the time to make, donate and say how much they cared – for us. I opened the bubble wrap and found the most beautiful handmade beaded bracelet I had ever seen. Each bead, blue in color for the color of “blue jeans (genes)” was distinctive from one another. They hung gracefully off of a copper colored chain amidst charm embellishments. One charm read “Believe”. I continued to cry as I put the bracelet securely on my wrist. In that moment, I felt incredibly loved and cared for.

Peering into the other blue bag, I noticed a Global Genes sticker – reminding us about Hope for Rare Disease – and two more handmade bracelets – just the right size for my two boys. Handmade with special blue threads, they too were thought of and cared for. Simply amazing.
You have to understand, I get thank you’s quite often from the organization I work with, other parents and families with children of rare disease. I even get the occasional kudos from individuals who hear of my advocacy endeavors. Yet…. Something about receiving the note and absolutely BEAUTIFUL blue bracelet from a total stranger – tugged at my heart strings. This gift gave me hope and comfort. It helped me to realize that those of us who have lived with a chronic illness within their family aren’t the only ones that care. THAT to me – was a blessing.

Michelle had also enclosed her business card: http://www.michellemach.com. I have plans to send her a heart-warming thank you – although what she has done for our family, for me – thank you just doesn’t seem enough.

Our gloomy day ended brightly. In fact, the sun had come out and the weather had finally reached a comfortable temperature. Although my personal accomplishments for World Rare Disease Day were less than par for my own liking, the day could not have been more perfect or complete.
Michelle and Global Genes Project – THANK YOU.

p.s… I’m still wearing my bracelet today .

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