Support Izzy's Fight Against Neuromyelitis Optica

Read Izzy's Story

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On January 24, 2024
My granddaughter Izzy had a normal day of playing and dancing with her 3-year-old sister Gracie, got baths, and went to bed as usual. The next morning, my daughter Justina went to wake Izzy up to start their day, only to find her unresponsive and limp. Justina immediately called 911, and Edgewater Fire Rescue arrived, stabilized Izzy, and took her to Halifax.
After a Few Hours
It was discovered that Izzy had no movement from the neck down. She had experienced an unknown episode overnight and woke up paralyzed. After a long wait, Izzy was transferred to Armond Palmer in Orlando, where she spent almost three weeks undergoing breathing assistance, plasma paresis, IVIG infusions, and steroids. She was diagnosed with Transverse Myelitis at that time.
During those two weeks
Izzy was able to move one of her arms and turn her neck. She was then transferred to Nemours Children’s Hospital, where she spent approximately 10 weeks in inpatient rehab, receiving physical, occupational, and speech therapy. Izzy was able to regain about 85% of her upper body movement.
After a very long three months
Justina was finally able to bring Izzy home at the end of April, right before her second birthday. Izzy has since been attending numerous doctor and specialist appointments, along with physical and occupational therapy, as she still cannot move her legs, and her bladder and bowels are not functioning properly.
On July 15th
Justina and Austin received the devastating news from Izzy’s neurologist that she was diagnosed with Neuromyelitis Optica, a rare disorder. Without proper medication, treatment, and therapy, Izzy is at risk of losing her eyesight, never walking again, and having a life expectancy of just five years.
Neurologist Referral
Her neurologist has referred Izzy to specialists in Philadelphia and Birmingham, as these doctors specialize in NMO. Intensive therapy has also been recommended. Unfortunately, Izzy’s health insurance will not cover any out-of-state doctor visits or the intensive therapy, so all care will have to be paid out-of-pocket. The intensive therapy program is a three-week program, and the only available openings are in Los Angeles, Texas, Boston, and Chicago, all of which are quite expensive.
What happens now?
If Izzy does not receive the intensive therapy and the proper medications and treatment, she risks losing her ability to walk, potentially losing her vision, and not surviving beyond the age of seven. This extensive medical care and therapy are crucial to the longevity and quality of her life.
Donations Welcome
Izzy is such a sweet and happy little girl who has not let her disabilities stop her from enjoying playtime with her sister and cousins. She is a very determined little girl who will fight this, and I believe that with the proper therapy, she will be able to overcome this. We have set up this fundraiser, for anyone who would like to donate. We ask that you keep Izzy in your continued prayers.
Donations accepted here
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