My 15-month-old daughter is now scheduled for surgery with Dr. Scott on 2/10. She had a very bad flu right before Christmas, then woke up paralyzed on the left side. (Prior to this was never sick and ahead of schedule in developing.) An MRI showed a stroke and a small older stroke. After several days and lots of tests here in FLA, we sent her films to Dr. Scott who diagnosed moyamoya.  Because of her young age, he will not even do an angiogram, but will go right to surgeries in 2 stages a week apart. We are preparing to spend a month in Boston. Chloe has regained all movement in her left arm, but still cannot walk. She does not appear to have suffered any damage to her intelligence, so we know we are lucky. We are scared and are trying to find a place to stay in Boston. The Ronald McDonald House only takes families of cancer patients, so we may have to pay a small fortune for a hotel. Appreciate any stories of success with young moyamoya patients. Dr. Scott said his prognosis is guarded.

You are in good hands.  Dr. Scott is great.  My daughter had two moyamoya surgeries.  She is having her first soccer game this saturday.  As far as staying up there a month find a hotel that is in a 5 mile radius that is cheaper than the ones right next to the hospital.  The parking garage will cost you $8 a day to park there. Now one parent can stay there with them. My wife slept in the room with my daughter, in a parent room, and in the waiting room.  I even thought of sleeping in my car with a sleeping bag. I would bring along a small TV. Food is expensive too so bring a cooler, and make your sandwhiches for the room.  Just a thought to save you money. I wish you the best.  God bless....