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SuperZ

Organized by Alexis Kollias Thiele
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SuperZ Fundraiser - unisex shirt design - front
SuperZ Fundraiser - unisex shirt design - back
SuperZ shirt design - zoomed
SuperZ Fundraiser - unisex shirt design - front
SuperZ Fundraiser - unisex shirt design - back
Gildan Ultra Cotton T-shirt

Harness Z Power!

Custom Ink
All funds raised will be paid directly to Team Zacchaio for Medical Expenses.
$950 raised
65 items sold of
50 goal
Thanks to our supporters!
$22
Gildan Ultra Cotton T-shirt, Unisex - Antique Royal
Gildan Ultra Cotton T-shirt
Unisex - Antique Royal
  • SuperZ Fundraiser - unisex shirt design - small
  • SuperZ Fundraiser - unisex shirt design - small
Organized by Alexis Kollias Thiele

About this campaign

He's no ordinary one year old.

Only time will tell how genetics has writtenhis next chapter.

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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. 10849065_10103877192546863_3035121870609634200_ojpg
http://aaatobabyz.blogspot.com/
http://youtu.be/7_AHUHsEiEs

Supporters

Rachelle Pappas 1 item
Anonymous 1 item
Claudia Villalobos 2 items
Rocio Campos 2 items

Mr.Thiele was my english teacher in high school. I know that he is a very wonderful person, my prayers go out to his family and his little one. God is big and He will make miracles happen. May GOD bless you little Z! Much love and respect!

Kitty 1 item + $10

I LOVE THESE GUYS.

Anonymous 5 items

Want to see your smiles always!!!

Anonymous 1 item
Jill Proctor 2 items
Anonymous 1 item
Dick and Bev Styll 2 items

To help and support Baby Z

Comments

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