Remember that disclaimer I made for little Alfie Evans? The same applies here. This is not a balanced, two sided story. I'm too angry to care what their "excuses" are.
Little Nhyariah was born with an incredibly rare genetic disorder called Trisonomy 9 Mosaic. It's so rare only about 100 living people planet wide are known to have it.
It is a genetic issue where one parent has a chromosone that has split, turned 180° and reattached. It is completely latent in the parent as they still have the correct number of chromosones.
However, sometimes their offspring will be given a third chromosone 9 instead of the normal 2.
This can cause all sorts of havoc in the body.
Most babies with the abmormality die before birth, and those making it through birth have only a few weeks life expectancy, most dying within a week of birth.
A rare few, like Nhyariah, live beyond infancy. She was born in Florida where she lived with her mother, Jasmin Mack, and her siblings. Nhyariah went to school, lived at home and thrived in her home in Pensecola.
At the age of 2 Nhyariah under went surgery to close up a hole in her heart from a congenital issue caused by the Trinomy 9 Mosaic.
The little girl healed up and had no further issues with her heart.
At the age of 3, Jasmin was declining payments from doctors in Gainsville Florida. They had propositioned the mother, offering her cash payments for allowing them to conduct experimental treatments on her daughter.
When Jasmin's mother passed away, she moved her family to Georgia to be closer to her sister.
For the first couple of months in Atlanta, Jasmin, continued driving Nhyariah to Pensecola to see her regular doctors, until the insurance could be switched over.
Let me make it clear that at this point, in 2015 Nhyariah was on zero medications. Her only medical interventions were her wheelchair and feeding tube.
Jasmins one hope was that having access to the larger hospitals in Atlanta would help Ny learn to walk.
With that hope in mind, Jasmin took Nhyariah to their first doctor's visit in Georgia. A routine visit with Gastroenterology, seeing Dr. Gayathri J. Tenjarla.
Jasmin describes their first encounter as Tenjarla entering the room without bothering to look at them, eyes on the chart. No words of welcome just the ominous words of "Oh! I have some freinds next door who would love to see you!"
Who was next door? Next door was the Pediatric Teaching Hospital affiliated with Emory University of Medicine. Named Henrietta Egleston Hospital for children.
Tenjarla was there for a routine check up. Nhyariah was not sick. But, without knowing her history, or reading about Trisonomy 9, the doctor insisted the girl be admitted to the hospital with her friends next door.
She claimed it was because Nhyariah was underweight. One of the most common symptoms of Trisonomy 9 Mosaic is slow growth, abnormally low weight and failure to thrive. If Tenjarla had contacted the doctors in Florida, she would have known that it was a constant part of her life.
Through the course of the next week, doctors at Eglestin ran several tests and changed Ny's meal plans three separate times. Still, her doctors in Pensacola had not been contacted for her care plan or her history.
By the end of that week of seeing her daughter being poked, proded and messed with, Jasmin lived every mother's nightmare.
The doctors at Egleston Children's Hospital contacted the Georgia Division of Family and Children's Services, accusing Jasmin of Medical Neglect.
Their claims were based on two things. Nhyariah was underweight. And while that was true, her mother is not some sort of superhuman fairy godmother that could wave her magic wand and single-handedly defeat Trisonomy 9. No matter how badly she could wish for that to happen.
The second was that Jasmin had allowed Ny to miss "a few" (as in they did not offer an actual number) of doctor's appointments. She could prove otherwise, but nobody wanted to listen to her.
Taking the hospitals word as gold, the DFCS took custody of Nhyariah and Jasmin was removed from the hospital, unallowed to visit, leaving her baby girl behind.
This was only the beginning of a living hell Egleston Children's Hospital and the Georgia DFCS would put our little girl and her family through. Yes. Our little girl. Just like Alfie, Nhyariah could have been any of our children.
Once Jasmin was firmly set out of the way, Egleston staff was given the green light to begin experimental proceedures on Ny, without even informing the mother of their intentions.
I'm sorry.
I got to this point and I am so emotionally fucked up I need to step away. I will finish the story of little Nhyariah tomorrow, I promise.
I need to go hug my children. Do the same for yours.