Toni Henry

Hello everyone,

We are the parents of a beautiful baby girl named Toni. As some may or may not know, Toni has suffered from many health conditions throughout her entire life but was admitted to the hospital on March 25, 2022. During her stay, Toni developed several infections, which she is still battling. Toni just turned 8 on July 21st and is still currently hospitalized for those of you who don’t personally know Toni or are not familiar with Toni’s story, please take some time to get to know this beautiful princess.

Toni was born prematurely at 27 weeks weighing 1lb 7oz. Toni then spent months in the NICU but at 6 months she caught a stomach infection and had to have emergency surgery where they removed most of her small intestines leaving her with only 11-15cm of small intestines this then caused her to have Short Bowl Syndrome which causes issues with her GI track and her ability to absorb nutrition. During this time Toni had to rely on G-Tube feeding to eat and due to her now having short bowel syndrome, this caused a growing disorder. After the surgery, Toni also developed PVL along with cerebral palsy in all four quads. (Periventricular leukomalacia (PVL) is a softening of white brain tissue near the ventricles. The ventricles are fluid-filled chambers in the brain. These are the spaces in the brain that contain cerebrospinal fluid (CSF). The white matter is the inner part of the brain. It sends information between the nerve cells and the spinal cord, and from one part of the brain to another.)

Later, Toni had to receive a trach and doctors also placed her on a ventilator to help her breathe. Toni spent the entire first year and half of her life in the hospital, Toni’s first-time home was not until she was just around her second birthday. Toni has had several hospital stays throughout her lifetime but this one is different and more serious than before. We drove Toni to Lurie’s Children’s hospital because what we thought to be just a diaper rash turned out to be much more severe. Toni’s body started to break out in rashes and her body began to swell in different areas. Lurie’s is where we learned her body went into septic shock, causing her pancreas to become inflamed. During this stay, they tried to feed her multiple times through her G-tube and were unsuccessful because her intestines were becoming inflamed, and her stomach was pushing bacteria into her bloodstream causing her to suffer from fevers and several infections that she had to try and fight off. The doctors then placed Toni on a TPN (bag of nutrition) to provide her nutrition. Toni had to get a central line placed every time she was admitted to the hospital to where her veins started to scar, and they could not be used anymore. Toni lost access to her last central line on 08/18/22 that’s when things took a turn for the worse. The doctors let us know there is nothing else they can do for her besides keep her hydrated through an IV, so her time is limited here with us.

Toni did not qualify for life insurance due to her medical disability since birth. We are trying our best to get all affairs in order before the time comes when it is too much to bear. We come to you all asking for prayers for strength and healing during this challenging time. Anything that you can offer is much appreciated! Thank you for your time, and God Bless!