7-year-old Matteson girl goes to Washington to lobby for fight against sickle cell disease
Olivia Shorter, of Matteson, walked the halls of the Capitol building in Washington, D.C., and entered the offices of several members of Congress for one-on-one meetings.
Shorter, 7, was there to urge lawmakers to help children, like her, who have sickle cell disease.
“Hello, my name is Olivia,” her pitch began, according to her mother, Danielle Shorter. “Thank you for helping children with sickle cell. Here’s my card.”
When Olivia saw U.S. Rep. Robin Kelly, her congresswoman, she gave her a great, big hug, her parents said.
“Olivia is a remarkable young woman,” Kelly said in a statement. “Olivia has become a powerful advocate for other children suffering from this disease. … Her selflessness and willingness to educate her community is truly inspiring.”
Her family’s trip to D.C. was paid for by Lurie Children’s Hospital in Chicago, where Olivia is a patient, as part of its Kids Family Advocacy Day.
“Children can’t vote and don’t normally have a voice on issues impacting health care policy,” said hospital spokeswoman Kathleen Keenan. “Although Olivia is only 7, she has already been an advocate in her own hometown. … Olivia not only had become a face for Congress and policy makers to remember, she’s become a force.”
Olivia first demonstrated her advocacy in a big way last year when she chose to host a sickle cell awareness event rather than the birthday party her parents had offered to throw.
The event drew more than 200 guests to the Matteson Community Center, where information about sickle cell was shared.
About 75 visitors also donated blood at the event to the Red Cross for people suffering the disease.
Olivia was named the 2018 Red Cross Blood Services Hero for her efforts.
She knows the importance of blood transfusions, as she’s needed them to survive since she was six months old.
But they are taking their toll on little Olivia.
Danielle said the multiple transfusions are causing her iron levels to be too high, limiting her ability to play in the pool this summer, although she’s been really wanting to.
Olivia is persevering, and Danielle said the D.C. trip has opened up possibilities for her future.
Danielle said this was the first time her family has been to D.C., and they were awed by the sights of all the monuments and museums.
She said the experience also gave Olivia ideas that she could one day be a lobbyist or a congresswoman.
“It gave Livy a sense of pride that, maybe, she could help pave the way for funding a cure,” Danielle said.
The Shorter family is planning another Olivia’s Sickle Cell Awareness Party from noon to 5 p.m. Sept. 15 at the Matteson Community Center.
So far, the festivities include bouncy houses and a visit from the Disney character Moana, but the family is still looking for donations to help fund for features. More information is at SickleSchmickle.org.