The cold winter temperatures here in Missouri had Deb Donatti, Owensville, wearing her wig again.
Donatti, who found out last July that she had breast cancer and, in the months that followed, lost all of her hair through chemotherapy and radiation treatments, had left her wig off during a trip to Orlando, Fla., the first week of February.
But it wasn’t just the warm air that made the difference, said Donatti. It was the overall experience with Inheritance of Hope, a nonprofit organization based in Pisgah Forest, N.C., that provides “Legacy Retreats” to families where one parent has been diagnosed with a life-threatening illness.
“I was able to just be me,” she remarked.
Donatti and her family — husband Jim of 25 years and their three children, Danika, 16, Cierra, 11, and Carson, 10 — were one of 16 families from 14 states invited on the trip with Inheritance of Hope.
Everything was provided for them, from the airfare, hotel accommodations and meals to tickets to places like Universal Studios, Disney’s Magic Kingdom and Sea World.
Volunteers, who paid their own way on the trip, served as caretakers for the families, waiting on their every need.
“Two ladies pushed me around on the days when I couldn’t walk any more,” recalled Donatti. “They went on the rides with my kids, if I couldn’t . . .
“They took photos of us when we were out. When we were hungry, they ran and came back with food.”
Volunteer counselors led group sessions where the parents could talk about their experience, including what it’s like to go through treatment while still having to be Mom or Dad to their children and all the duties that come with that, said Donatti.
The children had their own group sessions with a counselor.
“They did crafts and other things, but they also talked about what has this been like, how are you dealing with it,” said Donatti.
“For me, it was really emotional, but helpful, because . . . you find out you have cancer, then really quickly you start doing the treatments and surgeries and everything you need to do, and you don’t take time to kind of absorb what it is that’s going on,” she said.
There came a moment after one session where the parents were separated into two groups. Donatti had taken a break and when she came back in the room found herself facing a harsh reality.
“I came in, sat down, and realized I was in the room with all the sick parents,” said Donatti. “It was like someone had kicked me in the gut. I just wanted to get up and run out.
“I thought, ‘Yeah, that’s the first time I’d probably confronted it, because I’m usually the one who takes care of everything like that at home.’
“This is the room for the people who need someone else to take care of them. I’m the one . . . ”
Help for Her Family
When Donatti found the Inheritance of Hope website, http://inheritanceofhope.org, back in July, the same day she was told her diagnosis, she applied for her family to go on one of their trips because she thought it would be nice.
“I’m not one who sits there for long,” said Donatti, who had found a lump in her breast on a Monday, had a mammogram that Tuesday, a biopsy on Thursday and by Friday was told it was cancer.
She was home alone when the nurse called. She didn’t feel the need to call her husband just yet, and she wasn’t able to talk with her doctor that day. She needed to fill her time with something useful and productive, so she went online.
“I started looking on the Internet because if I’m going to have this, I’m going to find anything to help myself or my family in any way I can think of,” Donatti remarked.
She looked for charitable groups that might be able to help the family with gas cards, utility bills if they ever couldn’t afford it, medicine or treatment costs . . .
That’s when she found Inheritance of Hope.
“We hadn’t had a vacation in a long while, so, ‘Yeah, I’ll fill that out too,’ ” Donatti recalled.
‘Every Family Deserves a Legacy’
The tag line for Inheritance of Hope is “Every Family Deserves a Legacy,” and Donatti says that is truly what the group is all about.
The charity was founded in 2007 by Kristen Milligan and her family.
After being diagnosed with a rare terminal illness in 2003, Milligan searched for children’s literature to help her children, then ages 4, 2 and 7 months.
“Unable to find anything that met their needs, she decided to write her own book,” the website reads. “The result was ‘A Train’s Rust, A Toy Maker’s Love,’ the story of a train family whose mother begins to rust, prompting questions of the toy maker about what will happen next.”
Milligan endured her disease for nearly 10 years, including six surgeries, 22 months of chemotherapy, two rounds of radiation and two more books. She died on Oct. 26, 2012.
In 2007, Milligan and her husband, Deric, founded Inheritance of Hope to help every family achieve that kind of legacy. The mission is “to inspire hope in young families facing the loss of a parent.”
They began selling Milligan’s books, and in August 2008, hosted the charity’s first all-expenses-paid “Legacy Retreat” in Lake George, N.Y.
Now Inheritance of Hope organizes Legacy Retreats several times a year. The purpose is to help these families form lifelong memories together while they are still able.
For Donatti, one of the most special points of the retreat was being given the chance to record a Legacy Video. It was her chance to record private messages for her family in the event the worst happened.
“It was understood you may not need it for many years to come, because some of us were going to improve and some of us weren’t, but you could make it so it was there and it was a chance to say things to your family that were important and have that on video,” said Donatti.
Adding even more to the “legacy” theme, every family is presented at the end of the retreat with a scrapbook of photos from their trip. The photos were taken by volunteers and the best put together in an album done in today’s scrapbook style.
Families also are given a envelope full of other photos that didn’t make it into the album.
Donatti said up until taking this retreat, she hadn’t thought how important it was to create these kind of tangible keepsakes.
“When you’re in the middle of cancer or some other illness, you probably don’t stop to think, ‘Let’s take time to enjoy being together and having a good time, making special memories,’ ” she remarked.
“You’re just battling the disease, trying to get better.”
The true value of the retreat and all of its memories was hit home for all on the Donattis’ trip when, just a few days after they all returned home, one of the moms on the trip passed away, leaving behind a husband and three children.
“It just really made me appreciate what they are trying to do for families,” said Donatti.
“Sometimes it doesn’t always work out that the parent gets better . . . So it’s great that they’re thinking to help you get through whatever stage you’re at, to confront and deal with some things, to feel like you have a safety net, as well as making memories and doing things just in case.
“None of us know how long we’re going to be here, what’s going to happen,” said Donatti. “I don’t think I would have sat down and said, ‘I’m going to make a video that tells my family the things I want to say in case I’m not here.’ You just keep going thinking, I’m going to be here.”
‘A Good Mix’
On the retreat, the 16 families generally all went on their outings together, although individual families could do things on their own too, said Donatti. They also didn’t have to bring along the volunteers if they didn’t want to.
“But they were there if you wanted them,” she said.
Something very special that the volunteers provided was an evening alone, a “date night,” for the parents.
“The volunteers took all the kids to Dave & Busters for several hours, and they gave each of the couples an envelope with money for dinner and a number of a volunteer to call whenever you were ready to go and the volunteer would drive you and pick you up,” said Donatti.
Looking back, Donatti said there was no single activity that stands out from the retreat. Every day had something special.
“It was a good mix,” she commented. “There were hard things that I confronted about my illness, and members of my family were being helped to face things, but at the same time, there were people who said, ‘We’ve been there. You can do this.’
“It wasn’t just getting to go on vacation,” she said. “It was growing and learning through this experience we’d all gone through . . . It surprised me, because I didn’t know that existed, and I didn’t know I needed it.”
Looking ahead, Donatti is very hopeful about her future. She had finished her chemo treatments in October and had just a few radiation treatments left when she spoke with The Missourian in February.
“My prognosis is good,” she said. “I’m hopeful to be around for a long time.”
For more information on Inheritance of Hope, people can visit the website, http://inheritance of hope.
Applications to attend a legacy retreat are online, as well as applications to serve as a volunteer.
Donatti said as part of her application, she had to submit a written letter from her oncologist saying she was fit to travel and participate.