Monday, January 20, 2025
Mary Miller and Chris White faced what no parent would ever want to go through on Dec. 28, 2022, when their 9-month-old daughter, Lola Jayne White, died from complications of Crohn’s disease, an autoimmune disorder that affects the digestive system.
Miller, 35, and White, 36, of Seaford, left NYU Langone Hospital, in Mineola, with a memory box that contained a lock of Lola’s hair. Miller expected a call from a social worker, or perhaps a doctor, the next day, but there was none.
“When we left the hospital, we just felt so alone,” Miller said. “We didn’t know where to turn.”
Miller knew that she and her husband needed mental health resources to deal with the trauma, but they didn’t know the protocol, and their insurance didn’t cover therapy. She added that mothers in their community who had had similar experiences reached out with contacts for group therapy.
As they worked through their grief, Miller and White thought about other suffering parents like them who might not have had the strength to seek help. In March 2023, they created the Lola Jayne Foundation, a nonprofit that supports charitable organizations that offer those parents support and advance infant health care.
“I knew that we had to be that beacon of light for other people, and try to help them as much as we can, because we were in that position,” Miller said.
In less than two years, the foundation has raised scores of thousands of dollars, and is working to promote changes in how hospitals interact with families after the death of a loved one. Miller is its president and treasurer, and White its vice president. For their efforts to ensure that no parent who has lost a child feels alone, the Herald is proud to name Miller and White its 2024 People of the Year.
According to White, the Lola Jayne Foundation’s goal is to raise as much money as possible to fund grants for other community-based nonprofits that work with grieving parents. They have hosted two major fundraising events the past two Septembers, at Westbury Manor, which have collected over $100,000, and have given out several grants.
The first one went to Don’t Toss the Bouquet, a floral preservation service in Patchogue, which has an Angel Baby program for grieving mothers. The foundation also presented a grant last year to the Center for Hope at Cohen Children’s Medical Center, in New Hyde Park, a program that offers group therapy resources for parents who have lost a child.
At their most recent September fundraiser, White, a Nassau County police officer, and Miller, a stay-at-home mother of a 10-month-old daughter named Lucy, raised roughly $50,000, which was given as a grant to Luke’s Purpose in Commack, a nonprofit that provides financial assistance to families that have lost a child, whether to help cover the costs of funerals, burials and mental health counseling.
“People forget that the mortgage still needs to be paid, bills still need to be paid, funerals still need to be paid for, and bills really start to add up,” White said. “So we thought that would be a great resource, to give them a grant.”
According to Ashley Meyveci, director and president of Luke’s Purpose, it was established after her 2-year-old son, Luke, died in October 2022. Meyveci said she knew Miller and White from group therapy sessions at the Center For Hope, and they created their organizations at around the same time.
Meyveci said she was surprised by the size of the grant, and thankful. “It was amazing,” she said. “We didn’t know what the amount was until that day, so we were shocked about that,” she added, referring to the September event. “We were just so grateful that they selected us. The funds that they gave to us, it’s going to go so far.”
Miller and White have helped change how the hospital where Lola died assist parents who have lost a child. Alexandra Reens, director of the Pediatric Emergency Department at NYU Langone, where Lola Jayne White died, talked with Miller and White about their experience, and acknowledged weaknesses in the hospital’s procedures for dealing with the deaths of pediatric patients.
Now, the day after such a death, Reens said, a social worker calls the family to check in, and to provide them with resources to help them through the grieving process.
“That wasn’t done for Chris and Mary, and they shared that it would’ve been helpful,” Reens said.
She added that the new procedure was implemented at the beginning of this year, and the feedback has been positive. Miller and White, Reens said, are passionate about making a positive difference in other people’s lives, having turned a tragedy into something that can help others.
“It’s really just a testament to them,” she said. “I just think that they’re really inspiring and awesome.”
Miller said that no one quite understands what it’s like to lose a child other than a parent who’s been through it. Siblings, parents and grandparents can empathize, she said, but they can’t fully relate to the experience.
Meyveci said it has been great to see their organizations grow alongside each other, and they still text ideas back and forth. “We’re super proud of the work that they’ve done,” Meyveci said, “and I know Lola would be proud of them too.”
In the future, White said, he would like to hold more fundraisers, perhaps golf outings or running events. Managing the foundation was sad at first, he said, because they missed Lola, but it has been fulfilling to make a difference in her honor.
“To be able to help other parents, and relate to them, and be that glimmer of hope that somebody else was for us, it is incredibly rewarding,” Miller added.
The couple now care for Lucy, continue to heal and remain focused on keeping Lola’s memory alive through the work of their foundation. “We’re proud to be Lola’s parents,” Miller said, “and to honor her name.”
