Rowdy’s Wish Comes True

Around Christmas of last year, we were made aware of a little boy named Rowdy Ray Robinson. Rowdy is a very special little boy from Oregon whom is suffering from a rare genetic disorder (GJA1 gene mutation) as well as a condition called Oculodentodigital Dysplasia (ODDD) Syndrome. Along with these ailments, Rowdy also suffers from Epilepsy and Spastic Paraparesis. Rowdy’s parents also recently learned that he was diagnosed with Cerebral Atrophy, which is terminal.

My wife first connected with Rowdy’s mother, Jessica, in a Facebook group for moms. After hearing Rowdy’s story, she filled me in on it and we both became instantly connected to Rowdy and his family.

From seeing different Facebook posts from Jessica regarding various health updates, we came across a post of a bucket list. The top item on the list was to meet Anna & Elsa from Frozen, as the film is Rowdy’s absolute favorite. He watches the film constantly and just loves the characters and songs.

After seeing the list, I felt compelled to help in any way I could. My wife and I donated to the GoFundMe for Rowdy’s medical care and sent he and his sister Christmas presents; but this alone wasn’t enough. I decided to make it my mission to check off the first item on Rowdy’s bucket list.

I spent the following weeks trying to raise awareness to Rowdy’s cause and make contact with one of the actresses from Frozen. After countless social media posts, e-mails, and phone calls, I was contacted by a member of Kristen Bell’s “team”. Quite serendipitous, the woman whom reached out to me was named Ana.

Ana asked for some further information about Rowdy, to which I replied. The next day, I was e-mailed an audio recording from Kristen Bell saying “hello” to Rowdy! 

I can’t truly put into words what accomplishing this goal has meant to me. As stated previously, my wife and I instantly felt connected to Rowdy and his family. As a father of a one-year-old, I couldn’t help but think of how I would feel in their situation, knowing that one day I’l lose my baby. The thought has been moving me to tears on a near-daily basis for weeks.

Seeing a smile on Rowdy’s face after hearing Kristen’s message and knowing how much it meant to the Robinson family was one of the most rewarding experiences of my life. Although we don’t personally know Rowdy and his family and live on opposite sides of the country, the connection and bond we’ve forged has made us all family.

I’ve accomplished my initial goal, but have now set a new one. Rowdy’s GoFundMe money goal is set at $10,000 and I want to make that happen. I want to exceed that number. I want this family to be taken care of when the time comes. It’s not fair for a baby to suffer. It’s not fair for a baby to die. It’s not fair that parents have to lose their babies. 

If I’ve learned anything from Rowdy’s story, it’s to love one another like we’re all family. Cherish the time you have with your loved ones; you just don’t know how much time you’ll have to do so.

From the bottom of my heart, I want to thank everyone that helped to support this cause, share a Facebook post, re-tweet a tweet, or send words of love. 

To donate to Rowdy’s GoFundMe campaign, please visit: https://www.gofundme.com/f/help-for-rowdy-ray-robinson

Visit the Rowdy’s Rare ODDDyssey Facebook page and send some love: https://www.facebook.com/RowdysRareRoad/