Storytellers: Rhett & Dylan Carbine
Extraordinary Circumstance: Short rib polydactyly syndrome type II (SRPS)
Book: (completed; needs funding)
Words by Diane Smith
Design & Illustration by Randall Smith
Photography by Alysha Smith
Fun!raising by Peter Stevenson
Filming by Whitney Smith
Rhett and Dylan Carbine are the oldest and youngest brothers of four children who both experience a rare genetic disorder called short rib polydactyly syndrome type 2 (SRPS). This is a rare inherited, autosomal recessive, lethal skeletal dysplasia. They both have abnormal airways, small chest cavities, small long bones, hearing loss, hydrocephalus, shunts, cysts in their jaws that were removed, high blood pressure, abnormal digits, and speech impediments.
At the age of four Rhett’s chest cavity had not grown so he had to have his chest expanded. Titanium VEPTRs were inserted and every six months the doctor would expand the devices in order for the chest to grow. By the time he was 10 the VEPTRs were no longer working and he was placed back on oxygen. His need has continually increased to the point of four to six liters continuously with only 10% lung function. He attended Utah School for the Deaf and Blind, North Star Elementary, JMS (Jean Massieu School of the Deaf), and Skyline High School. He recently completed a youth church service mission. Rhett enjoyed Shakespearean competitions in high school and acting in general. Spaghetti and ice cream are at the top of his food choices.
Dylan attended JMS until the middle of third grade, and then transferred to North Star Elementary where he is now in fifth grade. He had several surgeries on one of his eyes in order to visually see correctly. Oral communication is difficult due to being tongue tied. Though he has a 75% lung function, it continues to decrease. Dylan’s hearing loss is significantly greater than his brother’s. Dylan enjoys giving hugs, sleeping, playing video games, pizza and desserts.
It was only in March of 2018 that the boys actually received a diagnosis of their illness. Until that time doctors and parents were unable to be proactive regarding their medical needs. Yet, even with this finding, each day is a welcome gift and not one taken for granted.
Read their book.
Copyright © 2019 by Dallas Graham. All rights reserved. No part of this book may be reproduced in any form by any electronic or mechanical means including photocopying, recording, or information storage and retrieval without permission in writing from the copyright holder.
Short rib polydactyly syndrome type II (SRPS)
RED FRED PROJECT WOULD LIKE TO THANK OUR FRIENDS AT PATIENT WORTHY FOR THEIR RESEARCH AND PARTICIPATION IN SHARING THIS VERY IMPORTANT INFORMATION WITH US REGARDING THIS EXTRAORDINARY CIRCUMSTANCE. YOU CAN LEARN MORE ABOUT THEIR WORK AT PATIENTYWORTHY.COM.