Joy’s road to recovery

https://youtu.be/6BfU9JQo3mA 

Joy McCury’s story is a long one with lots of twist and turns, ups and downs. On Saturday March 15th she was taken to the hospital after her father, John McCurry, watched her have what he thought were four seizures in a row during bed time.

Throughout the following day in the hospital Joy had more seizure like activity but also began crying out in pain, clenching and grinding her teeth, involuntarily kicking her legs and tensing the muscles in her body. The doctors, unable to identify the cause of her pain, waited for the results of an EEG that would tell us if she was in fact having seizures. During this time, they discovered her bowels were impacted.

Now on her third day in the hospital, while her pain level remained the same, Joy began to take a laxative to clear her system. Waves of pain struck every five to ten minutes, and her diaper needed to be changed every fifteen.

As her bowels cleared, she developed a fever. She stopped responding to attempts to communicate with her and did not seem to recognize anyone caring for her. This coupled with the pain, the now four days of no food or rest, led the doctors to believe that something more serious threatened Joy.

A couple hours after she was taken off the laxative, Joy suffered a Grand Mal seizure. She was sedated, given a spinal tap, and placed in the Pediatric Intensive Care Unit. Doctors and nurses worked to discover what was wrong with Joy. It was a blessing just to see her pain wracked body at peace.

She spent three days sedated and intubated. An MRI revealed swelling in her brain consistent with Encephalitis. Doctors ran blood tests for viruses and infectious diseases. They performed another spinal tap, MRI, and CT Scans.

Encephalitis can either be bacterial, viral or autoimmune. As the results came back negative for viruses and bacteria that could have triggered the brain swelling, a diagnosis of autoimmune Encephalitis seemed consistent with her behaviors and symptoms. There is still no definitive diagnosis, and many unanswered questions. 

During the final night of Joy’s sedation her family and friends gathered in the hospital, in their homes, and anywhere they were to join in an hour of prayer. Her dad asked that everyone begin that hour with this song: 
https://youtu.be/awkO61T6i0k

This is Joy’s fight song! 

As Joy woke from sedation and began to regain her strength and awareness, the road ahead for her, her father John, mother Janelle, and brother Jacob has become clearer but no less challenging.

She will need to rehabilitate her ability to speak and swallow, her gross motor skills for walking, and fine motor skills for playing and doing all the kid stuff a 4 year old does, all while striking a balance between her medications and their side effects. The first obstacle has been an irritated stomach lining likely from the steroids causing bleeding. This is the most current obstacle among the others. 

Still each day she continues to slowly improve. She recognizes her family, can indicate preference (She currently enjoys Frozen more than Moana), and took her first two steps while supported to give her family a hug. It’s been nearly two weeks of pain, fear, hope, and resiliency for young Joy who is about to turn five this May.

As Joy begins her road to recovery in Cincinnati we would like to surround John, Janelle and Jacob with love and support. As you can imagine this has been an extremely difficult time. While we can’t take away the pain they are experiencing we can try to offset some of the financial burden as they face intensive therapies, the need for food, shelter, gas, etc. as they prepare to transition to Cincinnati for an unknown amount of time. 

From the bottom of our hearts, we thank you for all of the love, prayers, support and care that has already been shown to this sweet, sweet family. 

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Organizer and beneficiary

Lindsay Mccurry 
Organizer
Lexington, KY
Johnathan Mccurry 
Beneficiary
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