burnsra/gist:3118530

## gistfile1.txt
Devin's Story

I guess the best place to start is at the beginning. When you’re expecting a child I guess everyone hopes for a routine "normal" delivery.

And so begins Devin's journey...

Devin's difficulties started with an unforeseen trauma at birth which led to developmental delays for all his bench marks. It seems now that all of Devins problems are not linked to this tragic event. He was late to turn over, crawl, walk and talk but otherwise was a happy and generally healthy baby. He was diagnosed with low muscle tone and attended therapies from 9 months on and continued to develop at his own pace. Devin's pace.

Once he was able to communicate he would complain of headaches that were so debilitating that he would cry out in pain, sleep and vomit. The doctors appointments were endless, going from specialist to specialist, with no answers. Devin entered school but experienced many difficulties learning to read, write and understand simple math equations he was far behind developmentally. It became clear Devin would require special schooling because after all he  is a very special boy.

Ironically on Mothers day 2007 he began another episode of headaches and vomiting but this time it was much different. He was having trouble communicating with us, words were jumbled and hard to understand. This led us to Florida South where a team of doctors found Devin had suffered three small strokes and his brain was not receiving the much needed blood flow. There is a disease called Moyamoya, doctors called Devins issues Moyamoya like but still no definite diagnosis. In May of 2007 he received an indirect artery bypass to help with this lack of blood flow to the left side of his brain. What a trooper. Devin never ceases to amaze us he came through with flying color. It seems as though it was much more difficult for the rest of us. Now to hope the surgery was successful !

After many follow up appointments and therapies and obtaining a school more suited for Devin's needs we were making slow progress. The last five years have been spent changing medications, monitoring his health and trying to recapture what he lost after his strokes. His condition affects muscle movement, learning capabilities, speech, memory, social abilities and every other part of his life that we all take for granted. He now receives eye therapy as well as occupational and speech at the school he attends.

Until recently we have been working toward gaining and improving his skills. About a month ago we got a call from his school that something is wrong. Devin is having involuntary movements causing speech difficulties,balance issues and uncontrollable body movements which was later diagnosed as chorea.

After speaking with the neurologist and the neurosurgeon we were sent to get an MRI/MRA and cranial angiogram. Results were: previous surgery is supplying minimal blood flow to the left side of the brain and the right side is getting 75% less blood flow than a mere 5 years earlier. We were advised to traveled to Boston's Children's Hospital to see Dr. Michael Scott, an expert on  Moyamoya and the only one skilled in performing the surgery that was looking more and more like a reality.

After traveling to Boston and meeting with Dr Scott We were advised that Devin's condition is still undiagnosed as it is atypical of Moyamoya Syndrome, but very much like it, he explained that Devins condition is rare....extremely rare. Dr Scott said he must consult with his team of neurosurgeons, he would let us know in a week if Devin was in fact a surgery candidate. In a conference referring with many doctors specialized in this rare disorder they agree he will need a direct bypass to restore blood flow to both sides of his brain and he needs is NOW.

Devins chance of having a major stroke without surgery is up to 82%, after surgery it drops to 4%. This surgery will be much more involved than the first. It will be an 8+ hour surgery, we will be flying up and back because there is no time time drive back up and the return drive back would be too hard on Devin.

We have struggled with Dr bills, the expensive schooling, the various therapies and the day to day expenses of having a special child. Devins eye therapy alone is $3500.00, his school is $22,000.00 and the list goes on and on. Insurance pays little if any of most of the expenses, you see, you can't get disability without a diagnosis. Devins condition is so rare, they have no name for it. Asking for help is not something that comes easy for us, but that is what I am doing. We need help, any amount is appreciated beyond words.

Devin used to call me Spiderman when he was younger....but you see,  HE is our Super Hero! He simply loves everyone with the innocence of a child, of a very special child!


Thank you from the bottom of our hearts.

The entire Bane Family
	Devin's Story

	I guess the best place to start is at the beginning. When you’re expecting a child I guess everyone hopes for a routine "normal" delivery.

	And so begins Devin's journey...

	Devin's difficulties started with an unforeseen trauma at birth which led to developmental delays for all his bench marks. It seems now that all of Devins problems are not linked to this tragic event. He was late to turn over, crawl, walk and talk but otherwise was a happy and generally healthy baby. He was diagnosed with low muscle tone and attended therapies from 9 months on and continued to develop at his own pace. Devin's pace.

	Once he was able to communicate he would complain of headaches that were so debilitating that he would cry out in pain, sleep and vomit. The doctors appointments were endless, going from specialist to specialist, with no answers. Devin entered school but experienced many difficulties learning to read, write and understand simple math equations he was far behind developmentally. It became clear Devin would require special schooling because after all he is a very special boy.

	Ironically on Mothers day 2007 he began another episode of headaches and vomiting but this time it was much different. He was having trouble communicating with us, words were jumbled and hard to understand. This led us to Florida South where a team of doctors found Devin had suffered three small strokes and his brain was not receiving the much needed blood flow. There is a disease called Moyamoya, doctors called Devins issues Moyamoya like but still no definite diagnosis. In May of 2007 he received an indirect artery bypass to help with this lack of blood flow to the left side of his brain. What a trooper. Devin never ceases to amaze us he came through with flying color. It seems as though it was much more difficult for the rest of us. Now to hope the surgery was successful !

	After many follow up appointments and therapies and obtaining a school more suited for Devin's needs we were making slow progress. The last five years have been spent changing medications, monitoring his health and trying to recapture what he lost after his strokes. His condition affects muscle movement, learning capabilities, speech, memory, social abilities and every other part of his life that we all take for granted. He now receives eye therapy as well as occupational and speech at the school he attends.

	Until recently we have been working toward gaining and improving his skills. About a month ago we got a call from his school that something is wrong. Devin is having involuntary movements causing speech difficulties,balance issues and uncontrollable body movements which was later diagnosed as chorea.

	After speaking with the neurologist and the neurosurgeon we were sent to get an MRI/MRA and cranial angiogram. Results were: previous surgery is supplying minimal blood flow to the left side of the brain and the right side is getting 75% less blood flow than a mere 5 years earlier. We were advised to traveled to Boston's Children's Hospital to see Dr. Michael Scott, an expert on Moyamoya and the only one skilled in performing the surgery that was looking more and more like a reality.

	After traveling to Boston and meeting with Dr Scott We were advised that Devin's condition is still undiagnosed as it is atypical of Moyamoya Syndrome, but very much like it, he explained that Devins condition is rare....extremely rare. Dr Scott said he must consult with his team of neurosurgeons, he would let us know in a week if Devin was in fact a surgery candidate. In a conference referring with many doctors specialized in this rare disorder they agree he will need a direct bypass to restore blood flow to both sides of his brain and he needs is NOW.

	Devins chance of having a major stroke without surgery is up to 82%, after surgery it drops to 4%. This surgery will be much more involved than the first. It will be an 8+ hour surgery, we will be flying up and back because there is no time time drive back up and the return drive back would be too hard on Devin.

	We have struggled with Dr bills, the expensive schooling, the various therapies and the day to day expenses of having a special child. Devins eye therapy alone is $3500.00, his school is $22,000.00 and the list goes on and on. Insurance pays little if any of most of the expenses, you see, you can't get disability without a diagnosis. Devins condition is so rare, they have no name for it. Asking for help is not something that comes easy for us, but that is what I am doing. We need help, any amount is appreciated beyond words.

	Devin used to call me Spiderman when he was younger....but you see, HE is our Super Hero! He simply loves everyone with the innocence of a child, of a very special child!


	Thank you from the bottom of our hearts.

	The entire Bane Family