Noah was born full term on Father’s Day, Sunday June 15, 2014 at 2:35am. Weighing in at 7 lbs 10.2-oz and 21-inchs tall, he was born healthy and had no indication of any health issues. Over the first 12 months, he grew at an impressive rate reaching the 95th percentile for height. He also reached all of the developmental milestones, except for minor speech delay.
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Birthday: June 15, 2014
Height: 21 inches
Weight: 7 lbs 10.2 oz
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When Noah was 15 months old, he had bilateral inguinal and umbilical hernias that were noticeable when he cried. His doctor assured us that it was somewhat common in baby boys and repaired it through surgery.
Ever since he was 6 months old, he frequently got sick and developed recurring ear infections. Again, his doctor thought nothing of it since it was common amongst children who attended Montessori school/ daycare. At 19 months old, he continued to have ear infections and failed multiple hearing tests, so he had surgery to implant pe-tubes.
As Noah approached his 2nd birthday, we grew increasingly concerned with his constant nasal congestion, chronic runny nose, and restless sleeping. He was finally granted a sleep study, which supported evidence of obstructive sleep apnea.
The investigation for obstructive sleep apnea lead to a diagnosis that changed our lives forever.
On Monday, August 15, 2016, Noah was diagnosed with Mucopolysaccharidosis (MPS II or Hunter Syndrome), an extremely rare progressive genetic disorder currently without a cure.
To slow down the progression of the disease and enhance his quality of life, Noah has weekly physical therapy, occupational therapy, speech therapy, and enzyme replacement therapy sessions (a 4-hour IV infusion of Elaprase).
There are very promising treatments, if not a cure, for MPS currently in clinical trials such as intrathecal-IT and gene therapy. We pray that these treatments will help save Noah’s life.
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Aside from this devastating disease, he is the most lovable and playful character. He has a very silly personality and loves to walk the dog, dance, play musical instruments, play ball, paint, eat, and splash in the water.
