Rhett

Parents: Matt & Sarah
Year of Birth: 2018
Hometown & Country: Atlanta, GA, USA

A Message from Rhett’s Parents:

After a healthy pregnancy, Rhett was born via c-section at 39 weeks, weighing 7 lbs., 11 oz. Shortly after his birth, Rhett began having difficulty maintaining his O2 saturations and was sent down to the NICU to be cared for and monitored. The NICU team discovered that Rhett was born with an anorectal malformation and needed to be transported to a nearby children’s hospital. He required emergency intubation and remained on a ventilator for 7 days. He had to undergo his first surgery (out of 7 total) when he was just 3 days old, and he stayed in the NICU for 10 weeks, mostly due to respiratory issues. During his time in the NICU and throughout the first couple years of his life, Rhett was diagnosed with several respiratory and gastrointestinal conditions. After a few rounds of genetic testing, we finally received a diagnosis in April of 2021.

Rhett required formula feeds through his g-tube until he was 3 years old, but now he eats a mostly puréed diet and can drink thickened liquids through a sippy cup. He still has a g-tube for fluids, but we are hopeful that he won’t have one forever. He is working on his chewing skills in speech therapy and is making great progress. His digestive issues have improved greatly over the past year, as well, which has allowed him to eat a more well-rounded diet and finally gain some weight. While he cannot sit, stand, or walk without support, he is determined and motivated to work hard in his weekly therapy sessions in an effort to reach his goals, no matter how challenging they may be. Rhett’s most recent sleep study showed a significant number of obstructions, so he will be starting CPAP therapy soon for his sleep apnea. 

Even though Rhett has several eye anomalies, we know that he can see. He can identify colors, objects, people, etc., but his field of vision is limited. He knows his ABCs, can count to 20, and does a fantastic job expressing his wants and needs verbally. He speaks slowly and must be given time to process questions, but he can speak in 5-7 word sentences and about 50-75% of his speech can be understood by strangers. Reading books, pretending to cook, watching his favorite shows, listening and dancing to music, playing on the playground, looking at lights, and going to the pool are some of Rhett’s favorite things to do. He has a tender heart, tenacious spirit, and a smile (with adorable dimples) that can light up the night sky. He is joy personified and a blessing to those who have the privilege of knowing and loving him. 

What are our Dreams for Rhett?

We thank God every day for our precious Rhett and pray to find a cure that will help him live a long, healthy life without limitations. We want him to be able to achieve anything his heart desires!

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