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By Shelagh Clancy
One of Brunswick County’s smallest residents is battling an illness with a big name.
Seven-month-old Seamus Smithwick is in Chapel Hill with his mother, Shallotte attorney Kim Smithwick, for treatment of a genetic immune disorder, hemophagocytic lymphohistiocytosis, known as HLH.
Seamus’ journey began when he was only 8 weeks old. He spiked a fever and was rushed to New Hanover Regional Medical Center in Wilmington.
“They did blood work and a spinal tap, but he got worse and worse,” Kim Smithwick said. “That was Wednesday. By Friday he was on a ventilator, getting blood transfusions.”
HLH is not an easy illness to diagnose. It’s rare—1.2 cases per 1 million people—and doctors worked to rule out other, more common conditions.
Dr. Philip Roehrs was on call that weekend. Roehrs specializes in pediatric hematology and oncology at the University of North Carolina in Chapel Hill, and NHRMC partners with UNC.
Roehrs looked beyond more common illnesses and wondered whether the small patient he was consulting about could have HLH. Soon Seamus was airlifted to Chapel Hill.
Seamus is a happy, active and easygoing baby, his mom said.
“He doesn’t know a stranger, smiles and talks with everyone he meets, and rarely complains,” Smithwick said. “He is so resilient and hasn’t let his illness slow him down at all.”
And he is a twin.
While he and his mother spend long hours together in Chapel Hill, his twin brother Declan stays in Shallotte with Smithwick’s parents, Dianne and Doug Baxley.
The twins’ father, Ryan Smithwick, also a Shallotte attorney, cares for Seamus’ sister Audrey, 6.
Kim Smithwick hasn’t worked at the family law office since the twins were born.
“Ryan and my dad are working hard to make up for my absence,” she said.
The time apart is difficult for the family, but they keep in touch with lots of phone calls, texts, and FaceTime (a video phone call program).
Toward a transplant
When someone has an infection, the immune system ramps up to fight it. With HLH, the immune system doesn’t turn off. It begins to attack the body.
Seamus needed a bone marrow transplant. Siblings are the best donors, but his sister wasn’t a match.
“That put him into the national bone marrow registry,” Smithwick said. (See the sidebar for more details on this program.)
Seamus had a bone marrow transplant Sept. 14 when he was just 6 months old. He has some discomfort, but his recovery is going well, Smithwick said.
Transplant recipients must stay in the area of their hospital for 100 days in case of medical difficulties.
“He will be discharged from the hospital at the end of October, but we will stay in the Chapel Hill area until the end of December,” Smithwick said.
She is able to stay in the hospital for now and will work out housing for the stay after Seamus leaves the hospital.
The family keeps friends up-to-date through a Facebook page, “Praying for Seamus Smithwick.”
“We feel very blessed. Brunswick County has been so supportive,” Smithwick said.
“If people want to support us, they can go to BeTheMatch.com and donate in Seamus’ honor. They can give blood or platelets in his honor,” she said.
Be The Match Registry helps find bone marrow donors
Bone marrow transplants save the lives of people with HLH, leukemia, lymphoma and sickle cell disease.
The National Marrow Donor Program helps save thousands of people with these illnesses. Patients need a genetic match, and even with millions of donors, many patients can’t find a match.
Anyone between the ages of 18 and 60 may donate.
Most donors are of European descent, and the registry especially needs donors with other racial and ethnic backgrounds.
How it works
First, patients undergo chemotherapy or radiation to destroy their diseased marrow. Then a donor’s healthy blood-forming cells are given directly into the patient’s bloodstream, where they can begin to function and multiply.
When you join the registry, a registration kit collects a swab of cheek cells. The results help match donors to patients.
The patient needs a donor who is a close genetic match. Seventy percent of patients do not have a donor in their family and depend on the Be The Match Registry to find a donor.
Seamus Smithwick had four matches, including one who met 10 of 10 genetic factors. That donor was a 27-year-old man in Germany. The bone marrow was couriered to Chapel Hill via airplane.
Learn more about becoming a donor at BeTheMatch.com.