Fort Mill resident Justine Seibel, at 18, has actually already experienced 5 knee replacements, three bone grafts and cartilage transplants on each knee and confronted countless various other complications.
Seibel is a leukemia survivor. She was diagnosed at 12 years old, a naked truth that put her at greater risk as leukemia frequently targets younger children, said her dad, Kevin Seibel.
The protocol for leukemia is the very same no matter the patient’s age, section of just what contributed to the lots of complications Seibel experienced, including making osteonecrosis, or bone death, in her knees as she was growing as soon as her treatments started, Seibel’s mom, Christine Farinick, said.
“This is just what happens as soon as you don’t do the research,” she said. “I ensure her protocol would certainly have actually been various offered her age if they had much more research.”
Now, Seibel is dedicated to the induce of sparing various other pediatric cancer patients from going through just what she did. Seibel is actively involved along with fundraising efforts for pediatric cancer in the Fort Mill community. She is likewise a member of the Teen Advisory Council at Levine Children’s Hospital where she was treated.
“We take the experience we had at the hospital and attempt to make it much better for youngsters going through treatment and make it a much more comfortable, much easier stay,” she said.
Seibel is likewise hoping to make it much easier for patients on Medicaid to grab the very best treatments for them no matter where they should go. Though not a Medicaid recipient herself, Seibel had to travel to Rush Hospital in Chicago for her knee surgeries.
On June 22, she joined three various other members of Levine’s Teen Advisory Council at the 2016 Speak Now for youngsters Family Advocacy Day in Washington, D.C., to lobby support for the Advancing Care for Exceptional youngsters Act of 2015, introduced to the Residence as H.R. 546 on Jan. 27, 2015, and in the Senate two days later as S. 298.
Many kids have actually to cross state lines to receive care for their unique conditions, and the bill aims to enhance coordination of that care and prevent duplication of services by allowing states to opt in to a care model created for these patients, according to Speak Now for Kids, an online kid advocacy network backed by Children’s Hospital Association.
The bill, stuck in the Residence Subcommittee on Good health and the Senate Subcommittee on Finance for much more compared to a year, essentially means families on Medicaid that have actually to travel from state to see specialists can easily still be covered, Farinick, said. Although it’s a federal program, Medicaid is administered by specific states.
On Capitol Hill, Seibel shared her story of going from an energetic pre-teen that played basketball and likewise watched kung fu, horseback riding and swimming, to a sick kid dealing along with surgeries, long hospital stays, steroids and chemotherapy.
“It came on quite sudden,” she said. “I was not a quite sick kid at all of (previously).”
Seibel nearly lost her life as soon as she went in to anaphylactic shock from her very first blood transfusion and her cognitive function has actually severely slowed as a result of the effects of chemotherapy. Again, she and her family blame the lack of research.
“There’s not enough cash for research for protocols,” she said.
Seibel and her family met along with North Carolina Sen. Thom Tillis’ staff and the staff of various other legislators, though none from the Fort Mill area.
“They actually didn’t already know that the bill existed and were type of shocked that something love this didn’t exist already,” she said regarding the congresisonal staffers she talked to.
“They believed it was an excellent excellent and were happy to provide the short article to their bosses. Speaking to the staff members was nerve-racking at first, yet it got better. It was an outstanding opportunity, and hopefully I can easily do it again.”
Today, Seibel is an intern at Baxter Village Good health Center, a National Honor Society student and a Baxter Barracuda junior swim coach. She will certainly be attending Auburn University in August and hopes to become a veterinarian.
With much more compared to 40 various other children, Seibel advocated for the Medicaid bill and brought it to Congress’ attention.
“They watched hearing our stories,” she said. “It was such an outstanding experience.”
Want to help?
Justine’s Seibel’s family has actually established a GoFundMe account to suggestions recover from the enormous cost of her medical bills. They are attempting to enhance $100,000 to replenish her college fund and suggestions along with various other expenses. To controbute, visit gofundme.com/Justine
