Help Noah receive a chance to walk on his own!

Hi everyone! My name is Samantha and I’m here to help one of the sweetest boys I’ve ever met.

 

Noah was born at 37.5 weeks gestation. Immediately we knew he was different than a typical baby, he was very quiet, sleepy and lacked the strength to feed orally on his own. He spent his first 40 days in hospital undergoing many tests, bloodwork, and surgery to correct a bowel  rotation. After finally being home for a few days he gave everyone a great big scare and had to be admitted once again due to seizure activity. When home and settled he began serial casting for his clubbed feet.

Due to regression from illness Noah had to undergo two rounds of serial casting and multiple tenotomies on both feet. Noah was finally diagnosed on his first birthday with White Sutton Syndrome which is a variant in the POGZ gene. This variant can be genetic or present entirely on its own by chance (de novo), like Noah's. This syndrome explains Noah's seizures, hypotonia (low muscle tone), feeding issues, GERD and cortical visual impairment, his low muscle tone makes him severely prone to pneumonia and causes digestive issues. We are hoping that with the purchase of a Trexo from Trexo Robotics we can get Noah upright and moving to create new neuropathways,

give him accessibility now and for school in the near future, help improve his digestive functioning, and overall development / quality of life.

 

Noah just lights up when we ask him about his time testing the Trexo. So now we're asking for your help to get him his very own. These devices come with an understandable price tag, and our list of needs doesn't end here. It would be greatly appreciated if you can help us on this journey to get Noah moving! Any donations count.

 

To see more about the device Noah needs head over to https://trexorobotics.com.

 

Thank you from the bottom of our hearts and we appreciate you all.