A Valley mother is praising the doctors at Phoenix Children’s hospital for diagnosing her “one in a million” child and helping save her life when the odds were stacked against her.
After advocating for her newborn daughter and working with doctors who were willing to help, they discovered little Genesis had a very rare disease - Griscelli Syndrome Type 2 - that could have eventually taken her life before she was 5 years old.
One of the big physical traits of the disease is babies are generally born with silver-colored hair - just like Genesis.
Fortunately, her medical team identified the disease, but for Genesis to survive, her treatment options were also limited.
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Doctors discovered the baby girl, who was just months old at the time, would need chemotherapy and a bone marrow transplant, and it would take finding a very rare match — a match she found just a day after Christmas.
“We had to be away from our home for over a year, in isolation. It made it incredibly difficult for me, as a single mother,” her mother told ABC15. “I was three hours away from everyone and everything I had ever known, trying to navigate my infant’s complex medical needs. Many times, the odds were against her. The fact she is alive today, is a miracle, when so many times she may not have survived. Along the way, I searched for signs that she’d be ok. So many times, my prayers were answered in the most bizarre ways.”
Genesis has had numerous surgeries and procedures because of the disease, but she is now 2 years old and her prognosis is miraculously a good one.
