The final pieces are falling into place for a seriously ill Kent teenager to receive a lifesaving transplant.
Jayne Johnson, 16, who suffers from a rare illness called Severe Chronic Neutropenia Kostman’s Syndrome, is being admitted Sunday, Nov. 21, to Seattle Children’s Hospital to begin preparations for a long-awaited stem-cell transplant.
The stem cells, delivered from two units of umbilical-cord blood, will hopefully develop a new immune system for Johnson, to replace the one that is failing, due to her disease.
According to her mother, Joey Sexton, Johnson will remain at Children’s for about 30 days. She will receive chemotherapy to destroy her failing immune system, followed by the stem-cell transplant to develop a new, functional one. Transplant Day – “the first day of Jayne’s new life,” according to Sexton – is Nov. 30.
Johnson, who has been dealing with Severe Chronic Neutropenia Kostman’s Syndrome since birth, originally was going to receive the transplant in July. But ongoing health issues caused the date to be pushed back.
Her failing immune system – bolstered by high-powered drugs – has kept the teen a virtual prisoner in her home. She lives in constant pain, and has to be stringent about avoiding any kind of illness.
The transplant is seen as her one chance for a normal life, although the risks are high, including her body rejecting the stem cells, or the stem cells attacking her organs.
The disease
Severe Chronic Neutropenia Kostman’s Syndrome is a rare disease that affects a patient’s immune system. Johnson’s bone marrow (the epicenter of an immune system) simply does not produce enough bacteria-fighting cells called “neutrophils.”
The result is that she doesn’t have the ability to fight disease (including cancer) that most people take for granted.
Since her days of infancy, Johnson has been receiving special medication to force her bone marrow to produce more neutrophils, but the medication is not working as well, and the side effects from it are increasing.
Johnson’s doctors were able to present a case for her at Children’s to receive the stem-cell transplant, given her increasing medical issues, and overall quality of life.
Learn more – and help Jayne
Family and friends have started a fundraising campaign to assist with expenses.
You can make your contribution at any U.S. Bank to the Jayne Johnson Fund, or www.savejayne.com.
Visit the Puget Sound Blood Center to learn more about donating bone marrow and blood.
Click here to learn more about Seattle Children’s Hospital.
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