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  • 6 Years Old

  • Heart Defect

Our next recipient of a dream therapy room makeover is sweet Jonah. This blonde haired, blue eyed surfer boy is a six-year-old who is full of life and an absolute joy to be around. He loves watching the Braves play, dancing to songs at Vacation Bible School and reading books. He can often be found playing hide and go seek, making crafts or being silly with his sister. Jonah’s life started differently than expected. After birth, he was found to have a cleft palate. The pediatrician also referred him to cardiology as he thought he heard an inconsequential heart murmur. Following the cardiology examination, Jonah was hospitalized immediately and they gave his parents life changing news. They told them that Jonah had a series of four major heart defects and they couldn’t believe that he was alive. Jonah was hospitalized for twenty-eight days. They were able to monitor him and discovered that he had Hypoplastic Right Heart Syndrome (HRHS), pulmonary stenosis, subaortic stenosis, bicuspid aortic valve and an atrioventricular septal defect. After closing his Patent Ductus Arteriosus, they then put in a g-tube and closed two hernias. His significant medical procedures did not stop there. Months after these surgeries, he endured the Glenn bidirectional surgery. Jonah was also in and out of the hospital several times due to colds and viruses. He had his cleft palate repaired when he was approximately a year and a half old.

Jonah was hospitalized for twenty-eight days. They were able to monitor him and discovered that he had Hypoplastic Right Heart Syndrome (HRHS), pulmonary stenosis, subaortic stenosis, bicuspid aortic valve and an atrioventricular septal defect.

He had kidney surgery at two and a half years old. In June of 2017, Jonah had his third stage heart surgery called the Fontan. Jonah will more than likely undergo another heart intervention in the future. Jonah had his tonsils and adenoids removed in June 2018 and will undergo another palate surgery in August 2018 to correct velopharyngeal incompetence. He is ready to take on all of these procedures with the spirit of a true warrior. Currently, Jonah is considered nonverbal, but is gaining momentum daily in speech. Jonah has a device to communicate, however most often he chooses to use words and sign language to make his needs known. Jonah loves going to school, doing hippotherapy at McKenna Farms, visiting the library and hanging out at Barnes & Nobles. He is a bright child that is willing to help with any chore whether it is yardwork, laundry or unloading the dishwasher washer. Jonah has been a fighter from day one. When doctors tell us that Jonah will not be able to do something, he defies the odds and proves them wrong. They told us that Jonah wouldn’t crawl or walk, but he did! He was tube-fed for years, but after participating in an intensive therapeutic feeding program at Marcus Feeding Clinic, he can now eat any food he wants and drink from cups. Jonah proves that where there is a will, there is a way! He is full of heart and vigor. Despite the challenges he has faced, Jonah’s radiant smile and infectious laughter have both remained constant. Sunshine on a Ranney Day wants to see more of his brilliant smiles and that’s why we can’t wait to finish his dream therapy room makeover! We’d love to have you join us at the unveiling of his newly redesigned therapy room!
Photography by Nicole Photography
Photography by Pear Tree Photography