Skylar Jones was 2 months old when doctors diagnosed her with spinal muscular atrophy, an illness that causes progressive muscle weakness and atrophy. Tragically, there is no cure.
“Skylar’s doctors told my husband and me that we’d be lucky to see her first birthday,” the late infant’s mother, Ashley Jones, recalls.
Following the diagnosis, the couple’s friends gifted them with a professional portrait photography session to help them preserve their memories with their daughter.
“The photos were a tremendous gift while Skylar was here and were even more powerful after she died at 21 months old,” Jones continues. “They gave me a safe space to cry and for telling her how much I missed her, as well as a way to hold her when she wasn’t there to hold. I realized I could let my feelings out, which was healing.”
Jones wanted to offer the same gift to others, so after a year of grief and healing, she began to offer free portrait sessions to anyone facing a terminal diagnosis.
Then, Nov. 19, 2015 – which would have been Skylar’s sixth birthday – Jones gathered her closest friends and family together to share her vision for Love Not Lost, a nonprofit that would help grieving people heal through photographs with their loved ones.
In honor of Skylar’s birthday, Jones set out to raise $6,000 for the launch of a website and a video. After reaching her goal, she launched the site Jan. 1, 2016. Two families applied to be served within the first month.
The Hill family was first. Doctors had diagnosed Kevin, a dad in his 30s, with stage four melanoma on the side of his face. While his wife, Rachel, and their two children, Jude and Evie, were hoping for a miracle, Jones offered them a free portrait session to “freeze time as a family.”
Rachel accepted and Ashley photographed the Hills on three separate occasions during their cancer journey. After Kevin died, Ashley presented the family with a book of highlights from each session.
Months later, Ashley received a phone call from an emotional Rachel.
“She said, ‘Ashley, I want you to know what this book means to us.’ I expected her to share her perspective as a new widow and single mom, but instead, she said, ‘Whenever someone new comes to our house, my little girl takes them by the hand, walks them to the living room and introduces them to her daddy through the photos you took.’”
This was a moment of illumination for Jones. The photographs not only had healing properties but also provided a pathway along which Kevin and Rachel’s children could navigate their grief and continue their bonds with their father.
Love Not Lost’s second applicant was a New York mom with metastatic breast cancer. The moment Ashley read Andrea’s application, she knew she was going to take a trip.
“The cancer had spread through her lymph nodes and into her bones in three places. She’d been through four surgeries, nine biopsies, five core bone biopsies, radiation and daily medication. Her application told me all of this, but then I reached this line: ‘I have two beautiful sons who are 16 and 13. We’ve never had a professional photo shoot. I’d love to have our relationship memorialized.’”
Ashley raised the money to cover her travel expenses and then met Andrea and her teenage sons on a summer day in Central Park. After the session, Ashley sent Andrea physical prints as well as a digital gallery.
Andrea, who continues to battle metastatic cancer today, also expressed profound gratitude to Ashley.
“You don’t know how precious those photographs are,” she wrote. “I stare at them every night during dinner because they make me happy. Those were the hardest moments in my life, but you captured our joy.”
Both of these stories inspired Ashley to grow her endeavor, which she’s rebranded to Momento Foundation. To date, the nonprofit – which shares an office with Whiteboard on Williams Street in Chattanooga – has photographed thousands of people.
But Momento Foundation has done more than snap portraits of these individuals and their loved ones; it’s also expanded its services to include community support and corporate care.
“Our Preserving Memories program is our direct way of supporting families in their grief and healing,” Ashley says. “However, we noticed some holes in our society when it came to support. As a result, we expanded our offerings to add community support and corporate care to give others the tools and education they need to love people well in grief.”
Momento Foundation’s Community Support program provides free education, tools and fellowship to those navigating a loss. Through its Corporate Care program, the foundation trains company leaders to better care for their employees by creating a culture of caring.
Ashley says Momento Foundation will continue to fill in the gaps it discovers to bring empathy, care and support to those facing loss and people looking to support others.
“No matter where someone is in life, and no matter the loss, we believe every person should feel loved and supported in their grief.”
Individuals and establishments can join Momento Foundation in this mission by sharing their talents and resources with the nonprofit. Monetary donations are paramount, Jones says.
“We serve a lot of families overwhelmed by medical bills and funeral expenses. Donations help us to equip families with photographs that not only support them in grief but also foster connections through the generations.”
Jones says introductions to funding sources such as corporate sponsors and foundations are also beneficial.
Moreover, as the foundation expands to a national level, it’s searching for professional photographers who are willing to volunteer to take pictures of terminally ill patients and their loved ones. After Momento approves a potential volunteer’s application, it provides trauma-informed grief and empathy training so they can also be cared for while helping others.
Interested photographers can apply through the “Get involved” selection at www.momentofoundation.org.
Finally, Jones is asking everyone who will lend her an ear to tell others about Momento Foundation.
“We’d love to have you spread the word so we can help more people heal in grief.”
Learn more about Momento Foundation.