My nephew has Prader Willi Syndrome as many of you know who read my writings here or my sister Rachel’s. It’s a rare genetic disorder, and, to put it bluntly, it sucks. I would do anything for these angels who have PWS.
This past weekend, Benny (another little boy with Prader Willi Syndrome) had a terrible accident and became paralyzed from the waist down. He had already undergone more than fifteen surgeries for his spine (unrelated) and now this accident! As soon as my sister told me about it I posted it on my Facebook page where I have 50k “fans.” (Fans. Meh. Ha. Yea yea. I am a fan of Benny’s, that’s all I know. And of everyone who demonstrated such compassion towards him.)
Anyway, I posted it on my Facebook page and wrote that Benny loved princesses. Any kind of princess.
I posted the address for the hospital and guess what? Two days later his mom Michelle posted a picture on Facebook of Benny covered in princess paraphernalia! I love my tribe. People from all over the world sent him gifts.
You see that? That is the power of a tribe. That is why I believe in social media. Fiercely.
This story has struck me to the core. I want to get on a plane and go be with this sweet boy in Delaware. He is begging the doctors to “Fix my legs! Take me back and fix my legs.” He is only eleven years old but he has so much to teach us. Look at the smile on his face. He said that he couldn’t believe so many people cared about him like this!
I loved that not one single person made a comment about a boy loving princesses. It gives me hope. For the boy who loves princesses, I wish nothing more than the power of a tribe to come together and help you feel better, even if for a moment. I hope you know how much love is being sent your way.
If you want to send Benny a card or a princess something or other, here ya go:
Benny Shirk. Dupont Hospital 1600 Rockland Rd.
Wilmington, DE 19803.
I share this here on Positively Positive because it demonstrates compassion. We need more of that in the world.
Don’t we? People looking out for other people. Look, I have never met Benny but I can’t stop thinking about him. That is “how may I serve?’ answered, isn’t it? When we want happiness for someone else, or healing, or whatever it is, and when it doesn’t even matter if we “know them” or not.
I went to hear my teacher Wayne Dyer a couple weeks ago here in California. He was talking about how he was a guest on a radio show years ago and Mother Teresa was also a guest on the show that day. The radio host kept asking Mother Teresa if there was anything he could do for her. She was there to talk about a homeless shelter she was opening. She finally told the radio host that there was something he could do for her.
Mother Teresa told the man that he should wake the next day at 4 a.m. and walk the streets until he found a homeless person. A person who felt utterly alone in the world. And that the man should convince this person that he wasn’t alone. That’s what you can do for me, she said.
So this is my attempt at helping sweet Benny feel not so alone. Will you join me?
Here’s to reminding us all that we are not alone. @JenPastiloff (Click to Tweet!)
I love you guys.
Benny will be in the hospital for six months or so. His aunt has sent up a donation fund. Here it is in case you feel called to donate or to pass it on.
His mom is posting updates here. The password is Bennyisawesome. (Isn’t he? Isn’t he awesome?)
Lastly, I would love to hear below what your answer is to the question, “How may I serve?” Post below.
I am so touched by the outpouring of love for this angel. I can’t wait to hug you guys in real life!My New Year’s retreat in Ojai, Calif. has 3 spots left. I will be in Vancouver Jan 17, and Atlanta and NYC in March as well as my annual retreat to Kripalu, a writing retreat to Mexico in May and 2 2015 Tuscany retreats. All info here. In between it all, I will do my best to keep writing my column here. xo jen
Jen will be leading a New Year’s Manifestation Retreat: On Being Human in Ojai, California. All retreats are a combo of yoga/writing and for ALL levels. Read this post to understand. Check out manifestationyoga.com for all retreat listings and workshops to attend one in a city near you (Dallas, Miami, South Vancouver, NYC & London are next). Jen is the guest speaker 3 times a year at Canyon Ranch and leads an annual retreat to Kripalu Center for Yoga & Health every February, as well as an annual invite only retreat to Tuscany. She is the founder of the popular The Manifest-Station website. Jen is leading Other Voices Querétaro in Mexico with authors Gina Frangello, Emily Rapp, Stacy Berlein, and Rob Roberge in May . Follow her on Instagram and Twitter. You can also find her at BeautyHunting.com.
image courtesy of Simplereminders.com.