Subject: Celebrate Rare Disease Day With Rare Acts of Kindness
From: "The Spine Group" <[email-masked]>
To: <[email-masked]>
Date: Wed, 27 Feb 2019 13:29:18 +0000
List-Id: 393a3a9a5596fbd288fdbdaf3mc list <393a3a9a5596fbd288fdbdaf3.2577.list-id.mcsv.net>

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** Celebrate Rare Disease Day With Rare Acts of Kindness
------------------------------------------------------------

February 28th is Rare Disease Day (https://thespinegroupdelaware.us20.list-manage.com/track/click?u=393a3a9a5596fbd288fdbdaf3&id=3aa07d0cd5&e=7b9b90a633) —a day near and dear to my heart. That’s because every day is Rare Disease Day for my four-year-old son, Ivan. Born with a rare genetic syndrome called Trichorhinophalangeal Syndrome Type 1 (TRPS), Ivan will inevitably deal with chronic pain as a result of this complex multisystem disorder that affects connective tissue. He is much more than TRPS, though! Like many other preschoolers, he loves soccer, all things outer space, and talking, talking, and…talking. I like to say he’s ordinary—and extraordinary.

Of course, our family is not alone in facing a rare disease. There are many genetic syndromes, and those who are afflicted often go underdiagnosed. And because these conditions are rare, they are often underfunded. So how can we honor those dealing with a rare disease and the families who support them? With kindness.

Last year on Rare Disease Day, Ivan and I bought lunch for the NICU nurses at Christiana Hospital. These men and women took wonderful care of Ivan and me when he was born, and I’m eternally grateful. We also went to A.I. duPont Hospital for Children and handed out flowers to patients, caretakers, and custodial staff. We called these our “rare acts of kindness.”

In honor of the children and adults affected by a rare disease, please consider doing your own rare acts of kindness on February 28th. Treat someone to a cup of coffee. Smile at a stranger. Donate to a good cause. Whatever you do will surely be appreciated. Ivan and I thank you.

To learn about The Spine Group’s chiropractic and wellness services, please call 302.595.3030.

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