As for the other special item on yesterdays menu, is the newspaper. Today the article we have been waiting for was published! Yea!
Have a look.
"Nevaeh DePape will not be defined by her disability.
The boisterous two-year-old, who can brighten up a rain-filled day with her angelic smile and infectious giggle, has Down’s syndrome – a chromosomal deficiency that has affected her mental and physical development.
Beneath her mane of wispy, white blonde hair, her facial features are flattened and her eyes are slanted because of the disorder. She’s undergone emergency heart surgery and facial reconstruction surgery also because of the disorder.
But having Down’s syndrome is not who she is, says mom Melissa DePape.
“She’s our little hero.”
From day one, Melissa has documented Nevaeh’s journey through the lens of her camera; she hopes to do the same for other children.
Nevaeh, which is Heaven spelled backwards, was Melissa’s inspiration for joining Inspiration Through Art, a non-profit organization that provides complimentary photo shoots and images to families dealing with the challenges of a child suffering from a serious illness or disability.
Inspiration Through Art, formerly known as the Littlest Heroes Project, was started in the United States in 2008 by then 19-year-old Felicia Reinhard.
Reinhard, who was born premature and addicted to drugs, knew first hand what it was like to grow up under a cloud of medical issues. She was determined to make sure other children suffering from any kind of illness or disability knew that they too were special.
“This organization gives parents memories that will last forever,” says Melissa, a professional photographer, and former educational assistant with the Chilliwack school district.
“It’s nice for parents, because when they’re dealing with hospital appointments and doctor’s appointments, this [taking photos] is one less thing for them to have to worry about.”
Melissa would know.
The first months of Nevaeh’s life were a struggle.
In addition to Down’s syndrome, Nevaeh was born with a hole in her heart that doctors had hoped would heal on its own.
Every week the DePapes were driving in and out of Vancouver to meet with doctors, pediatricians, cardiologists and other specialists.
But at six months, it was clear Nevaeh’s heart wasn’t healing. At less than 10 pounds, she was struggling to gain weight and struggling to breathe.
“She was tiny, so tiny,” remembers Melissa.
Nevaeh went in for emergency open-heart surgery on Oct. 16, 2008, where doctors discovered “very tired lungs.”
It was one of the hardest days Melissa has ever had to endure.
Her camera helped her through it.
Every day Nevaeh was in the hospital, Melissa took pictures. She took pictures of grandma reading to her, of dad playing with her hair, of them bathing her, cuddling her, prepping her for surgery.
And following the five-and-a-half hour procedure, Melissa took pictures of her daughter hooked up to life support machines, and feeding tubes, and of bandages covering her abdomen. She took pictures of the before and after x-rays of her lungs, of the day the bandages came off, and of Day 6, the day they could take her home.
“Looking at these photos now makes me feel sad a little bit, but it also makes me remember how lucky we really are,” says Melissa.
“Some people might think it’s weird to do this, but it’s part of our life. It’s important that Nevaeh knows what she went through and to see how strong she has become. It’s important for her to know that we can get through anything.”
For more information on Inspiration Through Art, visit the website www.littlestheroesproject.org/ or contact Melissa DePape at 604-316-0335 or by email at melissadepape@shaw.ca."
kbartel@theprogress.com
Thank you Katie for writing such a wonderful article. Your words ring so true and brought tears to my eyes. Nevaeh and I will save this story and read it together when she is old enough to fully understand just how beautiful she is.
~M
xoxo
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