LARSON: Little girl's story a testament of love and hope

Janiah Maddox

Janiah Maddox

Janiah Maddox has a lot to be thankful for, the most important of which is her loving mother, Nicole.

Janiah was born Sept. 3, 2008 with Kasabach-Merrit Syndrome, a rare life-threatening disease in which a vascular tumor leads to decreased platelet counts and bleeding problems. Her condition required chemotherapy when she was three months old. It helped curb the disease but weakened her immune system. When she was 15 months old, a bout with ecoli led to further medical treatment.

"She was lying on the gurney at Scottish Rite. Her fingers, toes and lips were blue. I was afraid she was gone," Nicole said.

Janiah was transported to Egleston where doctors performed ECMO treatments for several days. Unfortunately gangrene set in and doctors had to amputate one leg at the hip and the other leg above the knee. Two months later, she lost both hands. To keep her system under control, Janiah lay in an induced coma for a month and a half. Nicole, devastated by this life-changing event for both of them, did not cave in.

"I knew I had to prepare myself, so I turned it over to God," she said. "The whole time she was in the coma, every day I anointed her, I prayed over her and I read to her."

"When she came out of her coma, she had to relearn everything, how to sit up, how to eat, but she never cried."

To help reconnect Janiah to where her life left off, again Nicole read to her and played music.

"She was really into the Barney song and that's what started to bring everything back."

As Nicole faced financial challenges with Janiah's condition, St. Vincent de Paul Society from St. Monica's Catholic Church in Duluth offered assistance, which included a car so Nicole could transport Janiah to doctor appointments.

In August, Janiah started pre-K at Simpson Elementary, recently named a Blue Ribbon School of Excellence.

Here she blends right in. I watched as she handled flashcards and practiced writing. She sat in a chair and kept perfect time with a rhythm stick and when she did the chicken dance, I had to hustle to keep up with her.

"She's very independent. We make very few adaptations for her," her teacher Susan Cmiel said.

The future looks bright for Janiah, especially if she could be considered for a hand transplant.

The surgery has been available in the United States since 1999. Emory performed the first hand transplant in Georgia in 2011. So far the procedure has only been performed in adults with the exception of two cases (performed outside the U.S.) with identical twins where anti-rejection medication was not an issue.

If Janiah qualifies for this surgery, she will be touching on cutting edge science and will have a great impact on the future of these types of transplants.

Thanksgiving is a time for reflecting on what is important in life, including faith, hope and love. For Janiah, I see her mother's faith, her mother's love, and for both of them hope for the future.

Susan Larson is a writer from Lilburn. Email her at susanlarson79@gmail.com.


anne1015 2 years, 7 months ago

Thank you for sharing this amazing story! Janiah is truly an inspiration !!


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