Meet the extremely awesome Evan!
Evan is a strong six year old diagnosed with CCHS shortly after he made his entrance in this world. C.C.H.S. is a lifelong multi-system disorder of the central nervous system where, most dramatically, the automatic control of breathing is absent or impaired. A CCHS patient’s respiratory response to low blood oxygen saturation (hypoxia) or to CO2 retention (hypercapnia) is sluggish during awake hours and absent to varying degrees during sleep, serious illness, and/or stress. While most CCHS patients breathe adequately, though shallowly, while awake, observation of their respiratory status is required for optimal outcome and mechanical ventilation is required for sleep, illness or other periods of low blood oxygenation. O2 and CO2 monitoring during sleep is optimal.
Evan’s mom shared with us that van is a happy, fun-loving little boy who enjoys music and playing with his older brother. Evan takes piano lessons and plays T-ball and soccer. Evan needs constant monitoring of his oxygen and carbon dioxide saturations, as he is unaware when he is not breathing. His motor skills and communication skills are behind others his age, but he works hard to improve his skills.
A heartfelt thank you to Jill of Jill Serrano Photography for capturing the everlasting energy and strong Evan. We love that Jill shared with us she could hardly keep up with Evan as he ran around the playground and enjoyed a beautiful evening with his family.
Evan, there os no doubt YOU make this a beautiful world!!
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