This little girl was born at just 26 weeks, survived a life-threatening disease that cost her most of her small intestine, and now her family is searching outside their state for a hospital that may be able to help her.
This little girl was born at just 26 weeks, survived a life-threatening disease that cost her most of her small intestine, and now her family is searching outside their state for a hospital that may be able to help her.
Mazlyn has already spent two weeks in the hospital this time.
And her aunt Destini reached out to me hoping someone who sees her niece’s story may know where this family should turn next.
“Could you share my niece’s story? She’s got a rare disease and my brother and sister are trying to raise funds to help get her to a good hospital out of the state.”
Mazlyn’s medical journey started almost as soon as her life did.
She was born extremely premature at just 26 weeks.
Her family says she developed necrotizing enterocolitis, or NEC, a devastating intestinal disease that can cause severe inflammation and death of intestinal tissue.
For Mazlyn, the damage was enormous.
Her family says doctors had to remove most of her small intestine.
She survived.
But she was left with short gut syndrome, meaning her remaining intestine cannot adequately absorb the nutrition her growing body needs.
So Mazlyn depends on something most of us never have to think about just to receive nourishment.
She has a central line that allows her to receive TPN, or intravenous nutrition, directly into her bloodstream.
That central line also means something as seemingly ordinary as a fever can become a hospital emergency.
Her family says anytime Mazlyn develops one, she has to be hospitalized for at least 48 hours so doctors can make sure she hasn’t developed a potentially dangerous line infection.
But this hospitalization has brought another frightening problem.
Mazlyn’s family says doctors discovered she has acidosis, meaning there is too much acid in her body fluids and her blood pH has fallen below its normal range.
She has now been hospitalized for two weeks and counting.
And her family is searching for answers.
They say they’re waiting to hear from hospitals outside their state that specialize in Mazlyn’s condition, hoping someone can help determine what’s happening and what can be done to treat her.
Meanwhile, her parents, Justen and Nikki, are trying to hold everything else together.
They live about an hour from the children’s hospital where Mazlyn is currently admitted.
They want to be beside their sick daughter.
They also have another daughter, Maci, who just started school.
We’ve been asked to come together for them.
Maybe somebody reading this knows something that could help.
Maybe you’ve raised a child with short gut syndrome.
Maybe you know a pediatric intestinal rehabilitation program or specialist.
Maybe your family has walked through NEC and recognizes part of Mazlyn’s story.
Or maybe all you can offer is a prayer and a share.
Those matter too.
Please pray for Mazlyn.
Pray that doctors figure out what is causing this latest medical crisis and can get her little body stable.
Pray that the family hears from the right hospital and finds the expertise they’re searching for.
And pray for Justen and Nikki as they try to be parents to both of their girls while navigating a medical journey that began when Mazlyn entered this world far too early.
