For the last 15 years, Drew Leathers of Atlanta has suffered chronic pain from Neurofibromatosis (NF), a genetic disorder that allows tumors to grow on nerves throughout the body.
With his days numbered, Drew, 28, requested to meet with hospice care this week.
He also decided he wanted to celebrate with a “FUN-eral” on Saturday in Lilburn. The event is designed to be a celebration of Drew’s life.
Drew, known for his affinity for laughing, joking and upbeat attitude, is also the inspiration behind Cupid's Undie Run —a national fundraising event for NF research to the Children's Tumor Foundation. To date, the charity has raised nearly $8 million under the direction of Drew's older brothers, Chad Leathers, who is the executive director of Cupid's Undie Run, and brother Ben Leathers, who is the director of logistics.
“While Drew has done so much to bring awareness to a rare disease, today is a day to celebrate his joy and love for life. He will be remembered for impeccable humor, grit, toughness and courage,” said Chad Leathers. “He is also the best brother you could hope for.”
At 10, Drew Leathers discovered a small lump on his upper arm that doctors assured him was merely a “calcified hematoma” that had developed at the site of a vaccination. As the lump grew, it was determined that it would need to be removed. The biopsy showed that the lump was a benign tumor on the casing of a nerve.
Over the next few years, other lumps appeared on his back, under a shoulder blade, on his thigh and under his upper arm. By the end of his ninth grade year, a full-body MRI revealed that Drew had hundreds of tumors throughout his body varying from the size of a pea to softball-sized. It was then that Drew’s neurologist diagnosed him with Neurofibromatosis (NF) and was eventually more specifically diagnosed as Schwannomatosis.
On Tuesday, Chad Leathers, posted the following on his Facebook page:
“As some of you may know Drew has been fighting cancer over the past few months and today he wished to meet with hospice. He has lived in pain for 15 years and while today is a disheartening reality, Drew wants to do go out on a high note and celebrate with a “FUN-eral… So, if you’re around Lilburn this Sat Aug 8th we will be having a “life-day party” from noon - ??? BYOB, & Drew will bring the irreverent humor. “
Hashtags #ImWithDrew #HerestoDrew and #EndNF are trending on social media.
More than 200 people are expected to attend Drew’s FUN-eral on Saturday.
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