Karlos Has Spondylocostal dysostosis, Pectus Excavatum, Congenital Scoliosis, Thoracic Insufficiency Syndrome, Reactive airway disease, Oxygen dependent, very limited diet including feeding tube formula and yogurt, Right aortic arch with mirrored image branching, pulmonary hypertension, possible hearing problems, and is mildly delayed in speech.
He has needed three surgeries so far and will need many more in his lifetime. He currently has VEPTR rods placed in his rib cage, a feeding tube and is oxygen dependent. Karlos is two years old and you wouldn’t know he had anything wrong with him (besides having oxygen) unless I told you. He is quickly catching up and is getting stronger every day!
March is the Month to Share YOUR Story!
Do you or your child have a rare disease? We want to hear your story. This month we celebrate all patients and their families who speak out on behalf of their condition to raise awareness, connect with others and inspire the community. Make sure to share your story with us by writing to us here.
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