One of the most significant highlights of this journey has been the progress and growth we've witnessed in Rory. We have been able to access vital resources such as occupational therapy, physical therapy, and feeding therapy which have played a pivotal role in Rory's development.

 

In the past year, my son underwent G-Tube surgery, which has been life-changing for his feeding journey. Due to his laryngomalacia, Rory could not have meals without assistance and was initially sent home with an NG-Tube (which was inserted through his nose). Rory’s surgery allowed feeding to go through his stomach in a more reliable and safe way so that he could receive the necessary nutrition. With weight gain also being an issue, Rory’s G-Tube has provided support to his overall well-being and Rory is much more comfortable.

 

Rory also received his first pair of glasses. He fought them at first, but now we’ve seen leaps in how he engages and his willingness to interact with others. According to Rory’s therapists, glasses mediate shock and alleviate the strain of having to rely on his other senses. 

As part of his ongoing medical care, Rory continues to be routinely checked for any changes to his kidneys. These check-ups are crucial for any possible development of a Wilms' Tumor. 

 

We are overjoyed to announce that, thanks to the support of our community, we were able to acquire a stander that perfectly fits Rory's unique needs for $25, and he recently received his SFO braces and Benik vest. Rory can now engage with his surroundings at eye level and experience newfound freedom. He’s also able to watch his favorite YouTube series from NPR, Tiny Desk on our television.

Beyond the advancements in Rory's therapy, mobility, and medical care, we have had the privilege of participating in an EEG study conducted by UCLA and a survey conducted by the esteemed Kennedy Krieger Institute, all for Bohring-Opitz research.

 

I want to express our deepest gratitude for standing beside us throughout this incredible first year. None of these achievements would have been possible without continuous support and encouragement from individuals like yourself. Your contributions, whether it be through developmental toys, financial assistance, words of encouragement, or sharing our platform, have been invaluable in propelling us forward.

 

Our vision for The Super Rory remains steadfast: to continue building a community that celebrates diversity and resilience. We are committed to expanding our reach, forging new partnerships, and advocating for greater inclusivity and support for families navigating similar paths.

Meet Ayanna Carrington, the creator behind The Super Rory. Inspired by her son Rory's diagnosis of the rare genetic syndrome known as Bohring-Opitz Syndrome, Ayanna embarked on a mission to find solace and connection within a community facing similar challenges. Faced with the inability to find updated information on Rory's syndrome, she took matters into her own hands and established The Super Rory platform.

Rooted in the values of support, love, and community, The Super Rory serves as a safe space for families living with and loving those affected by Bohring-Opitz Syndrome. Ayanna's unwavering dedication shines through as she cultivates a network of understanding and empathy.

Join Ayanna and The Super Rory community in embracing strength, finding hope, and fostering bonds that last a lifetime. Together, we can overcome any obstacle with love as our guide.

By supporting The Super Rory, you directly contribute to our efforts in providing essential resources and meaningful assistance to families affected by Bohring-Opitz Syndrome.

Your support enables us to offer educational materials, connect families with specialized professionals, organize support groups, and facilitate access to therapies and interventions.

You can support us in various ways: by spreading awareness on social media, sharing our platform with those who may benefit, volunteering your time or expertise, making a donation to fund our programs, or becoming a mentor to families seeking guidance.

Together, we can create a robust support system and empower families to navigate their journey with strength and hope.