Searching...

No results found. Please try modifying your search.

Grandma to Run Half-Marathon for 3-Year-Old with Rare Illness

A decorative newsprint graphic.

Emily Progin, Content Manager

eprogin@helphopelive.org / 800.642.8399

Release: Immediate

GRANDMA TO RUN HALF-MARATHON FOR 3-YEAR-OLD WITH RARE ILLNESS

“Any Small or Sudden Movement, Even a Sneeze, Can Break Her Bones”

FARMERSVILLE, Texas—On Saturday, October 21 at The Onion Shed (154 South Main Street) in Farmersville, 66-year-old grandmother Stephanie Casson will embark on the Oktoberfest Trail Run half-marathon to raise funds and hope for a cause that’s close to her heart. Her three-year-old granddaughter Adeline Casson is living with the rare illness osteogenesis imperfecta. Stephanie’s half-marathon participation will raise funds for the nonprofit Help Hope Live in honor of Addie to assist with critical medical expenses.

The Oktoberfest Trail Run is Stephanie’s first long-distance run, following the Chaparral Trail in Farmersville and returning to The Onion Shed at the end. She has been training hard for the event and looks forward to crossing the finish line—and seeing Addie, who will be there to cheer her on.

Adeline “Addie” Casson was born on January 17, 2020. “None of us were prepared for how this little girl would change our lives forever,” explained Stephanie.

Addie was born with osteogenesis imperfecta, a rare and severe genetic disorder with no cure. “Any small or sudden movement, even something as small as a sneeze, could break one or several of her bones,” said Stephanie.

To help with the medical challenges of her diagnosis, Addie has a port on her chest to receive medications regularly. Thanks to these medications, she’s able to move around her house, paint, and participate in life as much as possible.

“Through this adversity, she continues to show us all courage and determination,” said Stephanie. “If there is a task to accomplish, she will get it done—no matter how long it takes.”

Every 6-8 weeks, Stephanie makes the drive from Lucas, Texas to Albuquerque, New Mexico, where Addie’s parents have lived since before her birth. The family also stays with Stephanie and husband Paul when they make the nine-hour trip from their home in Albuquerque to Dallas to seek out critical treatments twice per year.

Kate is a stay-at-home mom and Addie’s full-time caregiver. Father Steven is the sole financial provider for Addie and her two sisters. Stephanie has set a $10,000 goal for her participation in the half-marathon through donations to the campaign in Addie’s honor with the nonprofit Help Hope Live.

Funds raised will help to offset costs including a reliable wheelchair accessible vehicle, home modifications for wheelchair access, and other critical medical needs.

Donations can be made at: https://helphopelive.org/campaign/21509/

Stephanie chose to participate in the half-marathon to raise funds and awareness regarding Addie’s unique medical challenges and the associated costs. She plans to continue her commitment by participating in athletic challenges across the area in the months to come.

Unlike a GoFundMe campaign, donations to Help Hope Live are tax deductible to the extent allowed by law, and all funds raised will be managed by the nonprofit to cover verified medical and related expenses. Help Hope Live verifies medical and financial need for every patient.

Help Hope Live is a national nonprofit that specializes in engaging communities in secure, tax-deductible fundraising campaigns for people who need a transplant or are affected by a catastrophic injury or illness. Since 1983, campaigns organized by Help Hope Live have raised over $172 million to pay patient expenses. ###

Written by Emily Progin