7-year-old Evan Newport's short life brought 'hope to others'

Just weeks ago, Evan Newport was rushing through Ann Arbor in a stroller in the Big House Big Heart 10K race.

Just days ago, he was breathing without a ventilator and able to do some walking on his own.

And minutes before his death, he was laughing and playing in his bed like a normal 7-year-old, his father Scott Newport said.

Penni Newport, Nancy Cutler and Scott Newport surround Evan before the Big House Big Heart 10K race held last month.

But after years of struggling with Noonan syndrome, a genetic disease that causes heart defects and other physical problems, Evan lost the battle he had been fighting all his life.

He passed away Friday, Nov. 27 at his home in Royal Oak. Throughout his illness, he was treated at both Wm. Beaumont Children’s Hospital in Royal Oak and C.S. Mott Children’s Hospital at the University of Michigan.

“We always knew he would probably die young,” his father said. “We kind of expected something like this could happen.” But, he said, it was still a bit of a shock.

For many, Evan’s short life was one of inspiration.

After being born with the disease, Evan spent 8 months in the hospital before his parents were told to take him home to die in peace.

“He was an amazing little boy who fought every odd imaginable,” said Dr. Nancy Cutler, Evan’s doctor since birth. “He lived 7 years longer than expected.”

While alive, Evan’s life had its struggles.

His condition required both a breathing tube through a tracheotomy and a feeding tube through his stomach.

But despite the odds against him, Cutler said Evan’s life was a joyful one, mostly thanks to his parents and 11-year-old brother, Noah.

“He just lived his life happy as can be without knowing that he had anything wrong with him,” she said. “His family was his best advocate looking out for him.”

Newport’s warrior mentality and family motto was part of that support.

“Warriors know how to take on affliction, warriors may get knocked down but they always get back up, warriors know the greater the battle, the greater the reward, and warriors never go into battle alone,” he said.

Evan’s struggle and his family’s support have become well known in recent years.

Newport said he writes frequently about his son, whether in blogs, e-mails or published works, including “Chicken Soup for the Soul.”

His son’s story eventually reached the White House, where the family was invited to meet former president George Bush a few years ago.

Now, just a day after his death, Newport said he has received more than 300 e-mails of support from family, friends and followers who have been touched by Evan’s life.

“People have kind of followed his story, so they felt like they kind of knew him,” Newport said.

For Cutler, Evan’s story was a medical inspiration to those around him.

“He was hope, and life and family,” she said. “Living life to the fullest and having a family that loves you is what life is all about.”

Erica Hobbs is a freelance reporter for AnnArbor.com.