[DiamondSmiles]

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A family in Pueblo is remembering the life of a little boy was considered a medical miracle. Nickolas Coke has died. He's the three year old who was born without a brain.

Nickolas had anencephaly, meaning he was only born with a brain stem. Most babies with that condition are still born or die shortly after birth. But Nicholas lived a remarkable life.

Some of the final images of Nickolas Coke show him smiling at a pumpkin patch. "He was laughing because he thought it was funny that we couldn't get him to stay still enough to roll off the pumpkins.," said Sherri Kohut, Nickolas' grandmother.

Kohut believes Nickolas recently caught a virus. Early this morning she sensed something was wrong. "He woke up this morning around six. He was breathing really really bad," said Kohut.

Nickolas eventually stopped breathing. They gave him C.P.R., but after the third try Nickolas was gone. "They told us no more, let him go. So he died at 12:40 today. Peacefully," said Kohut.

The doctors never expected Nickolas to live longer than a few hours. We last spoke to his mother Sheena in July. "I think the love and caring that everyone gives him is making him stronger and making him live longer," said Sheena Coke.

They never focused on when the end might come, rather cherished and celebrated each day.

"He was never hooked up to any machines, no tubes, no nothing," said Kohut. "He taught us everything, he taught the love, how to be family. He taught us everything," she added.

Last month Nickolas became an older brother. "And she named him Jace Nickolas James." A namesake to honor a little boy--a medical mystery, who fought to live.

"And he was our hero because he showed the strength if I can do this anything can be done," said Kohut. "He will always be remembered."

The family wanted to extend a special thanks to Sangre de Cristo Hospice, which has been by their side during Nickolas' entire life.

"We just want to make sure everybody knows how wonderful hospice really is and if they have a family member in need the hospice services--it's a great team, they're there for you. They help you spiritually. They help you find the finances you need for certain things. We just wanted to thank the hospice team. Pastor Jake, Deb, Kay, Melody, Tara, Wilma. They helped guide us in the right direction," said Laura Mondragon.

"I want to thank everybody for their support of us. No one understood what we had to go through, but there were a lot of exceptional people out there that had kind words and respect for our family to understand Nicky was here for a reason," said Kohut.

If you'd like to help the family with funeral expenses they're setting up a bank account at U.S. Bank.

[themissinglink]

ds thanks for that one its truly the 1st vid that caught in my chest cuz of my nephew

[collaredgirl65]

I have wondered about this little guy. The last video I could find was of when he was 2. Sad to see him go.

[CuriousTwo]

"He was laughing because he thought it was funny that we couldn't get him to stay still enough to roll off the pumpkins.,"

Umm, not for nothing but if he only had a brain stem he wasn't 'thinking' about anything. A brain stem is bodily function only, reflexes, blinking, breathing, grimaces, digestion, reflex to stimuli, etc. I guess if it makes them feel better, more power.

[Rusty666]

interesting post

[Dazram]

Poor boy.

[DiamondSmiles]

Originally Posted by themissinglink ↗

ds thanks for that one its truly the 1st vid that caught in my chest cuz of my nephew

Did you have a nephew with anencephaly? Very sad.

[DiamondSmiles]

Originally Posted by collaredgirl65 ↗

I have wondered about this little guy. The last video I could find was of when he was 2. Sad to see him go.

It is sad. Wasn't there a little girl, too?

[DiamondSmiles]

Originally Posted by CuriousTwo ↗

"He was laughing because he thought it was funny that we couldn't get him to stay still enough to roll off the pumpkins.,"

Umm, not for nothing but if he only had a brain stem he wasn't 'thinking' about anything. A brain stem is bodily function only, reflexes, blinking, breathing, grimaces, digestion, reflex to stimuli, etc. I guess if it makes them feel better, more power.

There are other babies on here with that deformation.

I think it was stated they don't feel anything, but, it's terrible the way a hospital was torturing a baby with anencephaly in one video.

There are some that have no calvarium or just an opening at the top of the head.

Nick Coke was an interesting name though.

[ChristySD]

Thanks, honey, for this post. I was aware of his case when he was born and have tried to follow his progress from a purely medical point. You know how I am and how I feel towards children, but I can understand that this was anticipated. As someone else posted, it was wishful thinking on the parent's part that he was aware of what was happening in the world around him, but, realistically, he did not know. The brain stem is the animalistic part of the brain that keeps the heart pumping and the lungs breathing. I do not mean to sound callous, but this is medical fact. I do feel that the parents loved him very much and they will rejoice in the 3 years that they DID have with him.