After conquering sickle cell and multiple sclerosis, it was COVID-19 that claimed her – Lynchburg News and Advance

Jennifer Nsenkyire had been cured of sickle cell disease via stem cells.

After a lifetime of sickness, Jennifer Nsenkyire was cured of two separate and debilitating diseases with a stem cell transplant, and those who knew her rejoiced.

That included family in West Africa, where she was born, and the friends and support system she found in Fredericksburg, her second home. After the transplant freed her from the pain shed experienced since a toddler with sickle cell disease a hereditary blood disorder Nsenkyire became active with the Fredericksburg Area Sickle Cell Association, or FASCA. She worked to educate others about the ailment and how those with it could find help and support.

She was always so very, very kind and helpful to other clients, those who continued to suffer with the disease and are not eligible for transplant because of age, said Janice Davies, FASCAs co-founder. She had a presence that really resonated with everybody.

Nsenkyire shared her medical story with others through programs and videos to the point National Institutes of Health officials described her experience as one in a million, said FASCA member Myra Dicks. Nsenkyire also had battled multiple sclerosis until her transplant and, as a child, dealt with osteomyelitis, a bone infection that temporarily left her unable to walk.

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Then, in the strange way life sometimes works, it was yet another disease that took the life of the soft-spoken 49-year-old from Ghana. Nsenkyire contracted COVID-19 earlier this year and died on April 25.

The most ironic thing is she had been through all of that, and then to have something like COVID take her away, it was hard, Davies said.

It was heartbreaking, Dicks added.

As is customary in Ghana, family members held several celebrations of her life, culminating with a memorial service at the NIHs offices in Bethesda, Maryland, in late June. While those who knew her mourn her loss, they also celebrate the mark she left on the world.

She had this infectious smile that lit up the room when she walked in, you all know that, Fran Boyle said to the crowd gathered at Strong Tower Church for her funeral service.

Boyle was Nsenkyires host mother when she first arrived in 1995 to attend George Mason University in Fairfax. Boyle wanted to host international students, and Nsenkyire wanted to be paired with a Christian family, and Boyle said she loved her immediately.

There were plenty of ups and downs with her health, Boyle said, as the sickle cell disease caused swelling in her arms and legs, along with numerous pain crises. Thats when red blood cells, which have turned from their normal round shape to something resembling sickles, block blood flow through tiny vessels to the chest, abdomen and joints. A crisis causes varying intensities of pain that can last for hours or days.

Boyle recalled walking the hospital floors with Nsenkyires parents, Edward and Rose Nsenkyire, who divided their time between continents until they eventually settled in the United States, and her sisters, Pamela Asamoah and Clara Nsenkyire, who both live in the Fredericksburg area. Nsenkyire also has a brother, Dennis, in New Jersey.

Shed been through so much, said her sister, Clara Nsenkyire. It was crisis upon crisis.

As Jennifer Nsenkyire was treated at NIH, medical officials mentioned a transplant, using stem cells from family members that most closely matched her own. When the family gathered with NIH doctors for a consultation, they heard about potential side effects and werent sure which way to go, her sister said.

She was so brave, Clara Nsenkyire said. She said, Even if it doesnt help me, it will help somebody else.

Plus, Jennifer Nsenkyire wished she could live one day without the pain of sickle cell disease, her sister said. She opted for the transplant, using her mothers stem cells, and it was successful. After the 2010 operation, she was free of both sickle cell and MS, and she recorded her thoughts and experiences, both in YouTube videos and books she wrote.

She longed for a cure and for others to be free of pain as she was.

A cure would be, being able to live life with no pain, being able to live a productive life, being able to shake off the stigma that people have about sickle cell disease, she said in a video. Being able to live fearlessly, being able to live a normal life, thats all we all want at the end of the day. Its time to rewrite the story of sickle cell. Add your voice.

That she did, said Pastor Jeffrey Smith of Strong Tower Church, who said hers was a life that was lived so well and so elegantly before us.

In spite of the challenges and difficulties she experienced, she always had this strength of spirit, this tenacity, this perseverance, he said. She had this ongoing optimism and faith that would never die.

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After conquering sickle cell and multiple sclerosis, it was COVID-19 that claimed her - Lynchburg News and Advance