TSC causes a defect in one of the genes that is supposed to suppress tumor growth. Subsequently, in his short life, Nami suffers from tumors, cysts, and seizures. He has had hundreds of brain, eye, and heart tumors as well as kidney tumors and cysts. These tumors cause numerous health issues, many of which are not preventable and can be life-threatening. Nami is followed by many doctors and has continuous testing and scans to track the tumors so they can be treated when they grow.
Nami has endured times where he has had hundreds of seizures daily, and many life-threatening events which led to weekly stays in the ICU, life-flights, and intubations. Medicines were not controlling his seizures. He spent a summer in NY enduring 3 invasive brain surgeries to help his seizures as well as a surgery in implant a Vagal Nerve Stimulator (VNS) 10 months later.
In addition to all the medical issues, TSC has caused Nami to be severely autistic. He has flooded his family's basement, pulled apart and broke a washing machine, broke a TV, computer, many cupboards, and pieces of furniture, and punctured holes in the wall (just to name a few). He manages to cause daily disasters. He has wandered away from home and onto busy streets and climbed out of a window, holding on for dear life so as to not fall onto huge boulders below. He is hard to take into public because many people don't understand his behavior. One man even picked him up and violently shook him after Nami pushed his daughter when she got really close to him.
Despite all of this, there is no one better to put a smile on your face than Nami. He brings joy to all who meet him.
Although Nami is currently on Medicaid, his waiver ends in 2018 and taking care of this sweet boy is expensive! The Vimahi family has already spent tens of thousands on his medical care. In addition to the exorbitant medical costs, they have also (and will continue to) put a great deal of money into therapy, respite care, home adjustments for safety, physical care products, specialty clothing, adaptive equipment, video monitoring system for his seizures, etc.
So please help us reach (and hopefully exceed!) our goal so that we can help Nami, Annaka, and their family. We can't take the sickness away but we can certainly help ease their burden somewhat so they can focus more on fighting the disease and worry less about the finacial burden.
Let's band together and make a difference!
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- Carol & Grant Hanson
- Matt Fogt
- Anne Gunther
- Gavin Jensen
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