Photo shoots capture experiences of families of terminally ill children

— -- For parents of terminally ill children, professional photographs aren't typically at the top of the priority list.

But the Tiny Sparrow Foundation, an organization that matches professional photographers with these families free of charge, says the parents they serve are often "incredibly appreciative and grateful for the memories."

ABC News traveled to Richmond, Virginia, to document a Tiny Sparrow photo shoot with the Cummings family. Veronica Cummings, 10, was born with a genetic condition called Trisomy 13.

"All I remember was, when I looked up, his face had turned white," mother Christina Cummings said about her husband, Ronnie, when Veronica was first born, "and he sat down on the couch, hands on his head, and doctors were calling for other doctors to come in and they wouldn’t let me see her, and I was on a lot of medicine."

"And the next thing I knew, a little bit later, they had brought in a geneticist who handed me a page-and-a-half printout stapled together," she said. "I just remember reading 'Trisomy 13 is not compatible with life' and I couldn’t even read past that."

"I couldn’t even read whatever else was on there because I didn’t understand how to take that. I had no idea and I didn’t believe that was happening."

"Not compatible with life" is a phrase parents of children with Trisomy 13 often hear. And while Veronica needs a great deal of assistance in every respect, her parents say she is very much alive and a tremendous blessing to her family and community.

"I couldn’t say this at the beginning, but I think now that it’s really a gift that was given to us, she’s touched so many people around us in so many different ways," said her father, Ronnie Cummings.

"I didn’t grow up around anybody with special needs in my family, Christina didn’t either, and just the change it’s made in people in our family," he said. "For me personally, she’s made me humble in a different kind of way. She needs us for everything, and it’s just changed me as a person in a good way. We're lucky that we have her."

It's a testament to both Veronica and her devoted parents and sisters -- Ava, 11, and Charlotte, 6 -- that she has lived for more than 10 years. "She’s so strong, she’s a fighter," her mother said.

But Christina has had to come to terms with the reality of losing Veronica, in the last year. Tiny Sparrow had offered a photoshoot to the family in the past, but she declined.

"I wasn’t ready for it," she said. "I thought it was an amazing organization for a great cause. I loved the idea, but I didn’t want to accept that we were candidates for that."

Other charitable organizations had also offered the Cummings family services that she didn't accept for the same reasons.

"It felt like similar to the way Veronica got a Make-A-Wish trip –- I wasn’t ready to take that for a whole 10 years," Christina said. "[Make-A-Wish] had been telling us 'Take it, take these trips,' and I didn’t want to because it felt like it’s the beginning of the end. And I wasn’t ready for that.

"But this past year, actually, she had been really sick," Christina said. "She hasn’t been to school at all this year. She was supposed to have surgery in January, and she had a surgery this past summer, and it just kept feeling like more and more things were going in the wrong direction. And so I opened up my mind to it and I said 'Okay, let’s go ahead and get some memories while she’s looking good, while she’s happy.' So only this past year, after 10 years of people telling me, you don’t know how long you have with her you need to take advantage of all these things."

Tiny Sparrow has worked with more than 200 families since its inception in 2009 and say their goal is to capture feelings and personality.

"We try to capture their [the child's] spirit and their smile and just the essence of who they are and the innocence," Communications Director Mary Beth Thomsen told ABC News. "We also get to capture the love of their family."

The Cummings' other daughters spoke about Veronica's spirit.

"Her smile brightens my day," said Charlotte.

That smile is what professional photographer Katie Cartwright was hoping to capture during the photo shoot. The Cummings family was the third family she photographed on behalf of Tiny Sparrow.

She said she strives for "the photos you get of the child when you get that expression in their eyes, the light caught in their eyes where you know that that’s something their parents will really cherish."

Thomsen said the foundation does a "special screening for our photographers because we need them to know that this is a very sensitive situation and they need to be handle it emotionally and they’re going to be put in a situation that is very difficult for them."

Tiny Sparrow doesn't have trouble finding photographers willing to donate their services, she said. But the demand for these photos is great and since the photographers are volunteers, it isn't always easy to keep up. The organization said it hopes to be able to raise enough funds for some paid positions this year.

"We're hoping to fund some paid part-time positions so we can have some dedicated people to dedicate their time to making these photo shoots happen," she said.

But they continue providing their services to families. On an overcast day in Virginia, there was an appreciative family and a talented photographer capturing special moments between the parents and children. Christina Cummings called the experience a success and reflected on what having Veronica in their lives has meant.

"We wouldn’t see the world that we see it, we wouldn’t have the doors open that we have open for us if it wasn’t for her, if it wasn’t for Veronica," she said. "It’s showed us a different side of humanity, who we can be, and to show our kids the same -- to see them grow up with the type of heart and compassion that you don’t always see in kids now."

ABC News' Jeesoo Park contributed to this report.