Ron’s birth started off as a typical delivery but quickly, an emergency c-section was necessary. He was not breathing or moving. His lungs had not fully developed. Ron was in shock.
Genetic testing showed that Ron had an unusual genetic mutation. Genetic mutations can either be inherited or newly acquired. In Ron’s case, he was found to have a combination of these types of mutations, which is extremely rare. As a result, it is unknown what the outcome of his condition will be.
At three-months old, Ron arrived at ALYN Hospital. He depended on a ventilator 24/7. He was physically very weak.
Ron was hospitalized as an inpatient for four months in ALYN Hospital’s Respiratory Rehabilitation Department. In addition to respiratory rehabilitation, Ron received physical therapy three to four times per week, weekly sessions in the feeding clinic, speech therapy including using an eye-tracking system with a laptop, occupational therapy and hydrotherapy. The goal, of course, was to improve Ron’s medical condition so he could live with his family at home and integrate back into his community.
Dr. Nitay Fraenkel, Deputy Director of the Respiratory Rehabilitation Department, was able to wean him off the ventilator for twenty minutes at a time. His mother, Danit, said: “… being able to temporarily disconnect Ron from the ventilator gives us calm and time to process. We have learned so much at ALYN: how to treat him, how not to fear him, how to be his Ima (mother) and Aba (father).”
Ron has been discharged to continue his rehabilitation in the community, and will attend a rehabilitation nursery near his home starting in September. ALYN staff will continue to follow Ron’s progress and recommend treatment as needed.
ALYN Hospital’s innovative and best-in-class rehabilitation protocols advance the science of rehabilitating children worldwide who have disabilities, whether their conditions are common or, as in Ron’s case, highly unique. ALYN Hospital proudly continues to be a leading pediatric rehabilitation hospital, including pediatric respiratory rehabilitation.