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How a local nonprofit is persisting in its mission to save lives.
Four-year-old Luke Liedy dreams of traveling to space one day as an astronaut. Diagnosed with neuroblastoma—a cancer that develops from immature nerve cells—at 19 months old, Luke and his Apex-based family have had their fair share of air travel recently as Luke’s treatments have primarily taken place at Memorial Sloan Kettering Cancer Center in New York City. Although Luke received care at UNC Children’s Hospital in Chapel Hill at the onset of his illness, a surgeon at Sloan Kettering was needed to remove a tumor that had wrapped around his aorta and other major blood vessels.
This is where the Raleigh-based charitable nonprofit Children’s Flight of Hope flies into the picture to help families like the Liedys.
Children’s Flight of Hope provides air transportation to children who have been diagnosed with childhood cancers and other life-threatening diseases and are in need of specialized medical treatment, removing the financial strain that the cost of flying can incur for families.
There were 1,336 flights Provided to children with 153 diagnoses from 43 states and 23 countries last year. 10% were for North Carolina Families.
“What motivates us is the fact that these are real stories, with real children who are loved beyond measure,” says Pat Nelli, the executive director of Children’s Flight of Hope. “You never in a million years think this will happen to your family, and when it does, the stress and worry is overwhelming. Knowing that we play a role in the journeys of these families, while easing a part of their burden, drives us to continue to work hard to make a difference.”
In the midst of a worldwide pandemic, Children’s Flight of Hope is still working to alleviate the added burden of increasingly high costs of flights for families seeking specialists’ care at children’s hospitals across the country. But with COVID impacting operations for many industries, each step on the road to recovery for these children is under threat. The ongoing crisis has added pressure on businesses nationwide, and for charities like Children’s Flight of Hope, it brings staggering fundraising challenges.
With COVID largely curtailing two of the fundraising events scheduled for this year, Nelli says the need is more dire than ever to get the word out about an upcoming Denim and Diamonds Gala, Children’s Flight of Hope’s largest annual fundraiser. Traditionally held at the Angus Barn Pavilion, the gala raised $550,000 last year, setting a record for the highest-grossing event in the nonprofit’s history. This year, amidst the COVID backdrop, the event will be tweaked; Denim and Diamonds Home Edition will take place virtually.
“Though we are sad we can’t see our generous donors in person, I am excited for the ways in which holding a virtual event can allow us to gain exposure, or altitude per se, in other regions of the country, raising awareness for what Children’s Flight of Hope does outside of the Triangle,” says Nelli. “Our goal is to continue to accept requests from every family who needs help, even during COVID. With flights down because of the pandemic, and hospitals changing treatment schedules so they could care for COVID patients, to fundraising efforts, every facet of our mission has been affected this year.”
Nelli adds that she expects to see more families requesting travel assistance due to COVID-related financial hardships. The organization will continue in its determination to honor every request it receives for families who seek support, Nelli says.
Brynn and Justin Mainusch’s son, Julian, was diagnosed with rare skin disease Inflammatory Verrucous Epidermal Nevus (ILVEN) in 2018. With countless visits to specialists located in St. Louis, the cost of flights would add up quickly had Children’s Flight of Hope not granted the Fuquay-Varina family’s request for assistance.
“Thanks to Children’s Flight of Hope, he got the care he needed without us having to worry about the cost of flights adding to our already dire situation,” says Brynn. The Mainusch family has taken 14 flights with the help of the organization to date; as with all families that are a part of the Children’s Flight of Hope community, they will continue to fly with the group as long as Julian needs to until he turns 18.
As for Luke Liedy, he has been in remission for nearly two years and is currently taking part in a vaccine clinical trial through Sloan Kettering. Luke and his family have plans to fly with the help of Children’s Flight of Hope four times in the next year.
Perhaps while he’s on the plane, Luke will be dreaming of future trips to the moon.
Denim & Diamonds Home Edition
Children’s Flight of Hope’s annual fundraising gala, Denim & Diamonds, has gone virtual this year due to the coronavirus. Starting October 27, participants can bid online for the silent auction up through the night of the event, which will take place on Friday, November 6. Several special guests will be featured during the program, including CFOH Board President Jenn Wade, Spectrum News anchor Caroline Blair and several of the children who have received specialty medical treatment through Children’s Flight of Hope. Get dressed up in your glamorous gala attire and make themed snacks and cocktails to go with your home-viewing experience. Make a meaningful impact and support a great cause by registering for the
virtual event at: childrensflightofhope.org/diamonds
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