SuperZ

He was born by emergency C-section after the detection of large amounts of fluid accumulating around his heart and his lungs. Once he was born we realized that it was only the beginning. Zacchaio was diagnosed with an incredibly rare genetic syndrome, Linear Nevus Sebaceous Syndrome (or Schimmelpenning Syndrome). The syndrome is characterized by malformations of the brain, eyes, heart, kidneys, bones, and skin, all of which he possesses.

At 6-months old, Zacchaio developed simple partial seizures that quickly evolved into infantile spasms. He had as many as 450 seizures per day. The constant seizing not only led to a rapid deterioration in his development, but alsoahijacking of hisjoyful personality. In an effort to stop the seizures and save our son's life, we sought brain surgery and hadjust over a quarter ofZacchaio's diseased brain removed. He has been seizure-free and thriving since. Though brain surgery created permanentleft-sided blindness in both eyes, it has been the least of Zacchaio's worries. Sebaceous nevi (overgrowths of the sebaceous glands) cover him from head to toe on his right side and manifest as smooth yellow/pink/brown hairless plaques that are quite prominent. He has a life-threatening arrhythmia that has thankfully been receptive to drug therapy. Hestruggles with laryngomalacia and tracheomalacia (floppy airways) which have historically caused feeding troubles, difficulty managing secretions during colds, and sleep apnea. He has right-sided hemi-hypertrophy, faster/larger growth of bones, muscles, and fatty tissue, which has led to asymmetry in his body shape as well as a large leg length discrepancy. Zacchaio's syndrome is caused by a random KRAS mutation, an oncogene, whichputs him at a much higher risk forlung, esophageal, pancreatic, stomach,colon, and kidneycancers. He is also at great risk for leukemia and melanoma. Zacchaio currently has a large benign bone tumor and a newly discovered mass on his kidneys. One day at a time...

Zacchaio's spirit is unyielding!

May we never find his kryptonite…

SuperZ.
http://aaatobabyz.blogspot.com/
http://youtu.be/7_AHUHsEiEs