***UPDATE***

Genetic results came back revealing that Cade has a very rare genetic condition that causes profound neurodevelopmental delays. This disorder is called PURA syndrome. There are only 700 cases in the entire world. Cade will have a surgery to put a feeding tube in his stomach as he is unable to eat. He continues to require a breathing device. This is a lifelong condition with many unknowns. Management will include physical therapy, occupational therapy, speech and language therapy, extensive medical care and supplies, as well as 1:1 care. We are hoping to rally around Christopher and Melinda to help offset some of the cost it will take to care for Cade. He is our little miracle. Thank you for your help!!! We continue to ask for prayers and well wishes for them!!

They have asked that we include a website link so that others can educate themselves on this very rare condition.

https://purasyndrome.org/

Hello, my name is Anna and I am reaching out to help fundraise for this sweet baby, and my great nephew, Cade Steven. Cade was born on Friday January 31st to Chris and Melinda. They are first time parents and were so excited to meet their baby boy. They were expecting a pretty straight forward birth, however things changed quickly. When Cade arrived, he was struggling to breath on his own, so he was taken to the neonatal intensive care unit right away. The staff initially thought it was because he was a little early, but after almost two weeks in the NICU, things were not improving like they hoped. He continued to require a special breathing device and a tube for feedings. The doctors were concerned with Cade's muscle tone after he had aspirated (inhaled milk) into his lungs, so they began running some tests. With no clear answer found, they sent him via helicopter to Children's Hospital for further testing, they arrived there last night. He has been seen by several doctors today including a neurologist, geneticist and muscular specialist. They are imaging his brain and doing some blood tests to begin further work-up. He's unable to feed on his own, becoming too tired after only a few minutes. This, along with all the testing, is going to keep them in the hospital for an additional two weeks, possibly longer.

With so many unknowns, we are hoping to help support Chris and Melinda during this incredibly difficult time. Both are down at Children's to be there with him, they are so in love already. Please considering donating to help them with things like medical bills, gas and food. We are wanting to take away this stressor so that they can focus on that sweet baby. Thank you for taking the time to read through their story.