Heartbreaking news to share – sweet Evan, Niagara Falls baby born with extremely rare condition, has passed away.

March 16, 2018

Written By

Mary Friona Celani

Update: We are heartbroken to share this devastating news. Baby Evan has passed away. His family embraced and loved the tiny miracle for 38 days. He made an impact on Rachel and her entire family.

Our prayers go out to Rachel Collier and their entire family.

We first told you about baby Evan last week. He was born with an extremely rare condition called Walker-Warburg Syndrome and remains at Oishei Children’s Hospital.

Walker-Warburg is an inherited disorder that affects development of the muscles, brain, and eyes. It is the most severe of a group of genetic conditions known as congenital muscular dystrophies, which cause muscle weakness and wasting (atrophy) beginning very early in life.
Evan’s mom, Rachel Collier,  was hoping to find some guidance or support by sharing her story. We are happy to say that she has. She has been in contact with a woman named, Angela Dehart, from North Carolina. Her son, Chance, also has Walker-Warburg Syndrome. They have a Facebook Page called, Second Chance’s. Angela saw our story and reached out to us, and we gave her information to Rachel, who tells me the two have spoken on the phone and it has been a true blessing.

Another mom, facing the same diagnosis for her son, Chance.

 

But, an even bigger, more amazing blessing is this.

 

 

For the first time since her baby was born weeks ago, Rachel was able to hold her little boy,  “I held my precious, warm baby for hours as did his Dad. I smelled him, that baby smell, kissed his face a million times and he breathes more with stimulation, his favorite form is his little bum rubbed.”

It’s something many moms take for granted, but for Rachel, waiting and watching was torture. Evan is still on assisted oxygen, but he was taken off the ventilator, “We are so happy to be able to see that precious face without the vent and tape around his nose hiding it. He looks so perfect.” 

 

Rachel is incredibly grateful for all of the support she and her family have received, “I truly appreciate the prayers for Evan, he needs strength to get his breathing stronger and make it home with us.”

Rachel was able to sit with her baby boy and read to him; a moment, she says, meant the world to her.

Rachel’s friends and family have started a gofundme – to help with mounting bills – especially since Rachel is at the hospital with her baby and not working. Here is a link, please help if you can. https://www.gofundme.com/help-baby-evan 

https://totallybuffalo.com/falls-baby-facing-life-threatening-disease/

 

 

About Me

Welcome to Totally Buffalo! My name is Mary Friona-Celani and I am the creator of this site! After spending 20 years in the Buffalo media, I moved on to focus on my beautiful family. Now, the time has come for a new project. I was ready for something new. Something mine.
I am born and raised in WNY and my pride runs deep. My husband, Scott and I are very happy to be raising our four daughters here.

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