Ozzie

A Day to Shine Like Ozzie

April 26, 2022 marked Ozzie Deason’s first Angelversary, or one year since he passed away. On that day, friends, family members and the rare disease community came together to honor Ozzie’s memory with acts of kindness.

Ozzie’s parents Leah and Prime Deason marked the occasion on social media asking everyone to do something kind for others to mark the day. They also created a special Spotify playlist and handed out Blessing Bags filled with water, snacks and toiletries. Well, their request for kindness was answered in a BIG way.

Here’s some of Leah’s grateful post on social media:

“I don’t even know where to begin! It’s taken me a few days to decompress and soak it all in because it was such an emotional and joyful day! If you followed along on Tuesday, then you noticed my stories overflowing with nonstop shares from people participating and spreading joy to others through selfless acts of kindness. I wish I could share every single picture, but there are just too many. I saved everything in a highlight to revisit, so please check it out if you need a good dose of happy and to know that there are so many good things happening even during such dark times.

Here’s a tiny glimpse of what people did in memory of Ozzie:

☼ Handing out blessings bags
☼ Donations to various charities
☼ Gift cards sent to friends
☼ Paying it forward at coffee shops, smoothie bars and so many other places
☼ Lots of love to teachers, classrooms, secretaries and interventionists in the way of breakfast, snacks, thank you notes and supplies
☼ Goodies to healthcare workers, children’s hospitals, EMU patients, Ronald McDonald House families and fire stations
☼ Generously paying hotel bills for staff
☼ Handwritten notes placed in mailboxes of strangers
☼ Leaving large tips for service
☼ Handmade wreath delivered to the sweetest 95 yo lady who is home bound (her smile was so big!)
☼ Treats for Doggy Daycare
☼ Acts of self-care (being kind to yourself is a big deal!)
☼ Reading to kids at local libraries

I’m sure I missed many, but as you can see it was a day full of love and hopefully lots of smiles! It was such a special day, and I can’t thank everyone enough for honoring our sweet Ozzie. I think this is going to be our new tradition. I’m already looking forward to 4/26/23. From the bottom of our hearts, THANK YOU. It’s clear that Ozzie’s light is still shining bright for all the world to see!”

Ozzie

A huge thank you for all who participated and showed the Deasons so much love on this difficult day. We are so grateful for a supportive and compassionate community that comes together in the most wonderful ways. May Ozzie’s light continue to shine and bring out the best in people now and always.

Published

June 9, 2022

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Shine Like Ozzie Scholarship Winner Announced

Jordan’s Guardian Angels is proud to announce the winner of the 1st annual Shine Like Ozzie Scholarship.
 
Our scholarship recipient is Mireya Rahman of Texas Christian University!
 
Mireya is studying to be an MD and is currently involved in two studies, in Cerebral Palsy and Epilepsy through The University of Texas at Arlington and TCU School of Medicine/Cook Children’s Hospital respectively.
 
“Being on the forefront of research into fields largely misunderstood provides great potential to pave the way for future patients when it comes to lessening the burden of their diagnosis through medical intervention as well as social normalization,” said Rahman.
 
This $1,000 scholarship is for a student (undergraduate or postgraduate) studying anything related to Epilepsy. This year, in its infancy, the Shine like Ozzie Scholarship had 15 applicants which is above and beyond anything Jordan’s Guardian Angels anticipated. We are so very grateful the rare disease community came together to spread the word and apply.
 
Many members of our Jordan’s Syndrome community suffer from Epilepsy and debilitating seizures. That’s why research on Epilepsy is so important to us. It’s why we have joined the Rare Epilepsy Network, a partnership we are immensely proud of.

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Most importantly, this scholarship is in loving memory of Ozzie Deason and all the other children our community has lost. Ozzie lost his life last year after a battle with Epilepsy and Jordan’s Syndrome.
 
“The Shine like Ozzie scholarship is extremely meaningful to our family for so many reasons. Epilepsy ravaged our daily lives and stole so much from Ozzie, and we understand how critical it is for families to find the appropriate Epilepsy care,” said Leah Deason, Ozzie’s Mom. “We are overjoyed to know this scholarship will go toward training Epilepsy focused doctors which the Epilepsy community desperately needs. We hope that Ozzie’s story will fuel the desire to help other children like him and be a guiding light in educating others on the importance of ending Epilepsy.”
 
We hope to continue this tradition for years to come with new applications open annually on Ozzie’s Birthday. May his light and the light of all of our children forever shine.

Published

February 28, 2022

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Jordan’s Guardian Angels is a public charity exempt from Federal Income Tax as an organization described in Section 501 (c)(3) of the Internal Revenue Code, EIN 90-1022228. Contributions to Jordan’s Guardian Angels are tax deductible to the fullest extent allowed by law. No goods or services were provided in consideration for the contributions except as reported above.