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St. Louis, USA

At birth, August appeared slightly unique - with different sized pupils, a preauricular pit on the exterior of the ear, and translucently pale skin with visible veins. August seemed to be an angel of a baby that always was asleep, had an inaudible cry and didn’t stir around loud noises.

At his 3 month check-up, August was flagged for central hypotonia, limb hypertonia, and brachycephaly. This led him to be seen by the neurologist, who ordered genetic testing and a sedated MRI. There were no abnormal findings. However, as time began to pass, his parents watched August consistently miss most milestones. He struggled with constipation, agonizing to make a simple bowel movement. His hands were always firmly fisted, despite daily efforts to massage them to relax. His eyes wandered farther and farther apart. He began some self aggressive tendencies such as flipping his eyelids inside out. On outdoor walks and inside the house, he was incredibly sensitive to light. Tummy time was impossible, as his body was very limp and floppy. He struggled to stay awake during feedings, and had difficulty suckling from a bottle.

August was referred to receive further interventions, including vestibular therapy, feeding therapy, occupational therapy, and physical therapy, and he was directed to many specialists: neurology, dietetics, gastroenterology, audiology, ophthalmology, pulmonology, genetics, immunology, plastic surgery and an orthotic prosthetics lab. August’s doctors explained that his neck, limbs and trunk were incredibly weak, especially on the left side of the body. It became clear that August had trouble understanding how to use his fingers or hands. Due to his floppiness, sitting up independently seemed like a milestone that may never be reached. August continued to visit the neurologist for abnormalities, but doctors continued to find no known diagnosis.

At 15 months old, August had a bad bout of RSV. This caused him to suffer respiratory failure and require Intensive Care for a week. He had a difficult time recovering due to the weakness of his lung muscles. August now uses a medical oxychamber mask multiple times daily to combat long lasting effects of the illness. After 15 months of physical therapy, August could successfully crawl on all fours. Around this time (at 18 months of age), his family received a call that the doctors had found a diagnosis. To his parent’s delight – they discovered that Dr. Shinawi also lives and works in St. louis. It seemed that day, in this moment, that after a traumatic year their stars had finally aligned.

August is currently receiving treatment to prevent further respiratory illnesses and being immunocompromised. He continues aggressive physical, occupational, speech, feeding and behavioral therapy. In the chance that August is non-verbal, his family is learning sign language. Alterations are being made at home to ensure the house is safe for August’s walker.

Although August’s days are busy and naps constantly disrupted, August is remarkably resilient. He seems comfortable with constantly changing caregivers, shifting environments, and no consistent routine. He loves to snuggle, take baths, and spread smiles to anyone near. His progress and self determination is quite inspiring. Being August’s parents is the greatest gift that we could have received.

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