Our 6 year old son Ryan Arnold has been diagnosed with MoyaMoya disease. He is in need of brain surgery to take care of the "extensive" blockage that is on the left side of his brain. If you were like us, when we were told, it was like what is it called again? how do you spell it, etc...
On August 12th, 2012 he woke up with a headache, that progressed to seeing spots and colors on the ceiling and floor, to not being able to not remembering his age, sisters name, etc, then became frustrated and began crying, saying "i know nothing, i know nothing". Myself, i am a Firefighter/Paramedic, quickly picked up of the tia/stroke like symptoms and we rushed him to the closest childrens hospital. He was having trouble pronouncing things correctly still at the hospital. They did many test and found the blockage on his left side of his brain described it as an ischemic stroke and they then air lifted us to Miami Childrens hospital. After several more test it was confirmed it was moyamoya. Here's a description of what it is.
(From Dr Scott, Boston Childrens Hospital)
When we hear that someone has had, or is at risk for, a stroke, we tend to immediately picture an older person. "After all," we may think, "a stroke is something our parents and grandparents might face"”not our children." Unfortunately, pediatric stroke is a very real risk for many kids with certain cerebrovascular disorders, including Moyamoya disease.
Moyamoya disease, which is also known as Moyamoya syndrome, is very rare but very serious condition in which the walls of the internal carotid arteries"”the vessels that supply blood to important areas of the brain"”become thickened and narrowed. This causes the flow of oxygen-rich blood to the child's brain to gradually slow down, and makes it more likely that a blood clot will form.
This reduced blood and formation of blood clots are major risk factors for either a transient ischemic attack (TIA) also called a "mini-stroke,"or a full-fledged stroke.
- "Moyamoya" means "puff of smoke" in Japanese. The disease gets its name from the wispy, tangled appearance of the new blood vessels that emerge in the brain (as the body attempts to compensate for the inadequate blood supply).
- Moyamoya disease is a progressive condition, meaning that symptoms worsen over time and the child's chances of suffering a stroke increases.
- The only proven treatment for is surgery to create a healthy, adequate new supply of blood for the impacted areas of the brain.
- Boston Children's Hospital is one of the only centers in the world with expertise in treating Moyamoya disease. Our doctors have invented a highly effective surgical procedure called pial synangiosis to introduce a sufficient new source of blood vessel growth.
So you may ask, why are we raising money? We need to our son's surgery to be done by Dr. Scott, the expert Moyamoya doctor in Boston. It is a very delicate/risky surgery that lasts 7-8 hours. Risk of stroke is about 30%. Dr Scott and his team in Boston have done 800 of these surgeries. Our insurance company is refusing to allow us to go "out of network" in which case Ryan will have to have the surgery in Miami where his present neurosurgeon has only done 1-2 of these surgeries a year. All funds raised will go toward Ryan's medical bills for the surgery in Boston and travel expenses related to this surgery which will cost upwards of $50,000, which is our 40% share for going out of network!
Time is critical now. We can't allow an insurance company to determine the value of our son Ryan's life. Any amount is appreciated, and we know God will clear the way and He will provide whatever our needs may be. Thank you and God Bless...
The Arnold Family
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