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