Building Community: Rebecca’s Reason

WRITER | NICOLETTE CHAMBERY
PHOTOS | REBECCA’S REASON

 

Rebecca’s Reason is a nonprofit organization that exists to uplift families whose children battle life-altering disabilities. It was founded by Sarah Curtis, whose daughter Rebecca passed away 12 hours after birth from the crippling condition known as Edwards Syndrome, which results from the presence of a third 18th chromosome. Children who suffer from this disease are born with underdeveloped lungs, abnormal hearts, and defects in their organs that are usually fatal before birth or within the first year of life.

Despite the unlikelihood of Curtis carrying her daughter full term, she delivered Rebecca on September 4, 2015. In Curtis’s own words, “Rebecca was surrounded by family, felt no pain, knew only love, and passed away in my arms on September 5.  She was a blessing, incredibly loved, and will be forever missed by her family.”

Edwards Syndrome is exceptionally rare, with fewer than 20,000 cases reported in the US each year – one out of four ending in a loss. It explains why there are not more support groups available to parents and families who experience this trauma.

Rebecca’s Reason coordinates several fundraising events each year for the families facing the death of their child. In the past, the organization has been able to provide funds for headstones, chemotherapy, oxygen tanks, and other essential items.

Curtis has brought together a team of board members who have experienced similar losses in their lives and can understand the stress and pain that plague families during this time. They are passionate about the mission of the organization and dedicated to providing whatever service they can to mitigate the impact of this condition.

 The biggest challenge facing Rebecca’s Reason is the size of this problem and the limited resources they work with. Because of the extensive medical challenges caused by this disorder, more funds are needed to ensure that the diverse needs of affected individuals are met.

The signature fundraising event for Rebecca’s Reason is a purse auction preceding an elegant dinner that facilitates the connection between parents who have lost a child or know someone who has. There are other auctions the organization holds throughout the year, including two live auctions in the spring and early fall. Sports teams around the state have donated tickets to help the cause, including the University of Michigan, Michigan State University, the Detroit Lions, and the Detroit Red Wings. Southwest Airlines has also donated airline tickets to the auctions.

Curtis hopes to continue expanding the support Rebecca’s Reason can offer to families in need. In five years, she hopes to spread even more awareness to communities untouched by this illness, mobilizing additional support when tragedy strikes.

To help with the pain of these circumstances, Curtis offers some insight.  “We love to talk about Rebecca and offer encouragement to others who have lost children.  One of the greatest gifts you can give a grieving parent is simply to say their child’s name.  With this in mind, we do several events each year with our main goal of just speaking to the community and trying to spread hope.”

The next big auction for Rebecca’s Reason is September 9.

 Rebecca’s Reason Flint l (810) 449-3324 l RebeccasReason.org