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Coping with a rare disease: One family’s fight to save daughter’s life

Posted at 11:24 PM, Feb 25, 2016

GRAND RAPIDS, Mich. -- Leap year only happens once every four years. This year, February 29th will be recognized as Rare Disease Day, and in an effort to raise awareness, FOX 17 found a family with a little girl who has a disease that only 150 people in the world have.

Kenzie Bennett is only 5 months old, but has already undergone four major brain and spinal surgeries, along with many MRI's and visits to the hospital, yet doctors know very little about her condition.

Her parents are hoping to turn the situation into something positive by reaching out to other families who might be struggling with the same thing.

To parents Shannon and Michael Bennett, loving her is easy; her smile can light up a room.

"You love them more than your own life," Shannon said.

Unfortunately, Kenzie's future is unknown.

"I felt like the bottom of our world fell out when he said what she had, and that she’s one of 150 kids in the world with it [and] I couldn’t breathe," said Shannon.

Kenzie was diagnosed with Megalencephaly-capillary malformation syndrome at just 3-days-old.

"It's an ultra-rare condition," said Caleb Bupp, a clinical geneticist with Spectrum Health. The condition causes parts of Kenzie's body to grow faster than they should; including her brain.

"Basically, the risk of sudden death is ever present for her, unfortunately," Bupp said.

Kenzie has underwent several operations to relieve pressure on her brain and make more space for her brain to grow.

"She was almost a zipper from the middle of her head to the base of her back," Shannon said. "You go into a sort of survival mode, You get through one second at a time, one minute at a time until it’s over and then you look back and [take a deep breath]."

It's finding support in those deep breaths in a world full of the unknown.

"I feel like having a child or family member with a rare illness can be a very lonely journey because there are not a lot of a people out there that share your experience with you," Shannon said.

They're a family that's encouraging others to find resources and spread the word to never give up.

"Never give up on your child, they’ll blow your mind over and over and over again on what they’re capable of doing," Shannon said. "We have no doubt although her future may be uncertain , she’s going to do great things."

If you want to learn more about Kenzie or touch base with her family click here.

For more on National Rare Disease Day, click here.