Jovee Shae Strong!
Jovee Shae was diagnosed with Tuberous Sclerosis Complex (TSC) when she was 3 weeks old. TSC is a rare genetic disease with only an estimated 50,000 people in the United States and one million diagnosed in the entire world. TSC causes benign tumors to grow in the main organs such as the heart, brain, kidneys, lungs, eyes and skin. Jovee currently has six tumors in her heart, over ten in her brain and too many in both of her kidneys to count.
In November when Jovee was two months old, she became the third baby in the world to participate in the STOP2 clinical trial at Cincinnati Children’s Hospital. Jovee and her parents Josh and Nicole have been to and from Cincinnati four times since November and will have to travel there three more times before her first birthday in September.
Due to Jovee’s TSC diagnosis and her study medication being an immunosuppressant making her high risk, they decided it was best if Nicole left her job to stay home to take care of Jovee. While some clinical trials offer compensation, this one does not. The medication, lab work and doctor visits are covered by study funding. The family is financially responsible for the five EEG’s and four MRI’s (2 brain, 2 abdomen) she will have this year alone. While they do have health insurance, Cincinnati Children’s Hospital is out of network and because she is not yet having seizures (yay, the medicine is doing what it’s supposed to be doing) insurance will not cover multiple EEG’s or MRI’s in the same year, leaving the family with large out of pocket medical expenses.
The cost is never a question when it comes to your child, you do what you have to do. So I am asking for HELP for this sweet warrior and her family
This family will fight with her and for her, her fight is our fight!
Jovee Shae Strong!
Link to purchase support t-shirt below:
