Will’s Hope helps with unexpected expenses of childhood illness

    Kyle Lilly and Sarah Stubblefield rely on the charity Will’s Hope to help them visit their 1-year-old daughter, Jamie, who has intensive medical needs. Photo courtesy of Kyle Lilly.
    Kyle Lilly and Sarah Stubblefield rely on the charity Will’s Hope to help them visit their 1-year-old daughter, Jamie, who has intensive medical needs. Photo courtesy of Kyle Lilly.

    Imagine having a sick child and not being able to hold her every day.

    What if you had to borrow a car and gas money, then find a place you could afford to spend the night, just to see your child?

    That’s the situation Sarah Stubblefield and Kyle Lilly have faced every day since their daughter, Jamie, was born. They aren’t alone. Many families with medically fragile children experience similar challenges. A new nonprofit, Will’s Hope, has stepped in to help.

    Will’s Hope was founded by Donald and Elizabeth Savino, who own and run the Bogden House, a nonprofit established in 1992 to care for medically fragile children. Since running Bogden House — comprised of four small residential group homes in Mesa — the Savinos have seen many families in desperate need. When they could, the couple provided support from their own pockets.

    Will’s Hope addresses the need in a broader, more significant way, says Chaplain Greg Suender, its executive director.

    The nonprofit’s goal is to meet the emotional, spiritual and practical needs of families with children who require intensive care or round-the-clock nursing care. These are children with congenital or medical conditions that require full-time medical care to survive.

    Baby Will

    The charity is named after a baby boy who lived at Bogden House for a time. William Christian Olsen had severe medical conditions, including heart and lung disease. Through Bogden House, Will’s mother, Abby Olsen, learned how to attend to her son’s medical needs.

    She was able to bring him home for a short time. After Will died, Abby Olsen joined the staff at Bogden House. Her story, and the hope she shared with other parents, inspired the Savinos to name the charity after Will.

    “The whole point here is to give people hope in a hopeless situation. For some of them, that means they’re actually going to lose their child, [they are going to lose] hope, and —  as hard as that is — it is still going to be OK,” Suender says.

    For Will’s mom, working at Bogden House and the establishment of a charity named in his honor gave meaning to her son’s short life.

    Long-distance lifeline

    For Stubblefield and Lilly, Will’s Hope has been a game changer. Jamie was born on March 18, 2015, at 25 weeks, weighing just 1 pound 12 ounces. She had to be flow from the small hospital in Kingman to Phoenix. Since then, she has been in two hospitals, survived two surgeries and has been cared for at Bogden House. There were many times her parents were afraid she wouldn’t make it.

    “Our doctors told us her chance of survival was slim,” Stubblefield recalls.

    Complicating the situation, the Kingman couple couldn’t afford to be with her in Phoenix. With no car, no place to stay and little money for gas, weeks would go by before they could visit.

    Then came the day when they were told Jamie no longer met the insurance requirements for her hospital stay. But because of her continuing need for medical attention, it wasn’t possible to bring Jamie back to Kingman. That’s when she was taken to Bogden House, and the couple learned about Will’s Hope.

    “When she first went to the Bogden House, I was really, really scared, because I didn’t know any of the people [who] would be caring for my child,” Stubblefield recalls.

    That’s when Chaplain Suender met them, offering moral support and practical assistance.

    “He brought us Subway sandwiches for lunch, and he gave us this huge envelope,” Stubblefield says. “The envelope had a gift card to Fry’s, it had a gift card to a steak house, and it also had room keys for our hotel.”

    Jamie has been at Bogden House since she was 9 months old. Kyle Lilly’s job is in Kingman, and he hasn’t been able to find work in Phoenix. Covering the cost of Bogden House has stretched the family’s finances, so Will’s Hope has helped with food, lodging and gas money to bridge the gap.

    “It isn’t free; our insurance doesn’t cover her staying at the Bogden House,” Stubblefield says. “Our insurance doesn’t see the Bogden House as a necessity; it felt she could come home. But she’s still on all her IVs, and Kingman has no place to mix those IVs. The only place that mixes her IVs is in Phoenix.”

    Because of Jamie’s underdeveloped intestines and lungs, she requires a feeding tube, IV therapy and a colostomy bag just to stay alive.

    Growing support

    Will’s Hope does not give money outright to families, Suender says.

    “We pay vendors directly for whatever we’re doing,” he says. “For example, we buy gift cards at grocery stores, gas stations, restaurants and we pay for hotel rooms. We do not buy medical equipment unless it’s something that isn’t covered by insurance. We will help with counseling for the family members not covered by insurance, such as parents or a sibling of the medically fragile child. We can also help with entertainment for the medically fragile child, perhaps by buying a video game, coloring book, toys.”

    Household expenses are sometimes covered by the charity, and if a family gets behind on a bill or the child needs special accommodations that require home improvements, the organization could step in to help as well. A current challenge has the charity trying to figure out how to help one family afford the electricity required for a medically fragile child.

    For Jamie’s parents, the charity has been a lifeline, making it possible for them to travel to Phoenix at least every other week to see their daughter.

    “We still have absolutely no idea when she can come home,” Stubblefield says. “Every time they tell us it will be soon, she always has another complication come up.”

    In the meantime, there is Will’s Hope. It strives to grow, giving more families facing similar challenges a little help —  and, yes, hope.

    How to help: Will’s Hope, at 3654 N. Power Road, No. 105, Mesa, always needs volunteers and accepts monetary donations. Call 480-447-3705 or visit willshope.org.

    Special Needs Resource Fair, 2016, Raising Arizona Kids magazine, RAKmagazine, kids, Arizona