Today is National Purple Day! The Day of raising awareness of epilepsy and seizures. I donned my bright purple cardigan and off to work I went! There was a lot of purple in the office and I thanked them for wearing purple whether they did it for epilepsy or it was merely coincidence. I figured I could use their coincidence to raise awareness in a complementary way. "Hey, thanks for wearing that gorgeous purple blouse for Epilepsy Day". Gets'em every time!
I think back over this journey in epilepsy that started for us in 2006, and the beautiful people we have met through it. Two little guys I greatly admire are the Epilepsy Ninja Brothers. Nicky and Jordan are brothers who each have a different form of epilepsy. Nicky's seizures come in the way of auras of light and incapacitating pain. The poor little guy has been in and out of the hospital having more tests done than a little guy should, and we're not gettin much helpful information from the effort, but he charges onward with a huge smile on his face.
We met the boys along with their wonderful mom and dad after Joshua died from SUDEP. It was their early encouragement and support that brought me here today. We have met for ice cream, chatted and cheer each other's efforts to fight epilepsy. Of course, this leads to big squirmy hugs all the way around at the National Walk for Epilepsy the last two years. The boys are video stars bringing great awareness at such a young age. Oh, how I admire their courage and that they show no fear in their advocacy for epilepsy research.
The boys are such balls of energy, and you can't help but laugh when they're around. Such great kids, who could choose to be sad or greatly limited by epilepsy but who choose to champion over epilepsy and the side effects of seizures.
http://www.youtube.com/watch?v=XqAbf76vpM8
Then there's Mylissa who is a fellow Danny Did Ambassador who I met last year at an epilepsy walk in memory of Chelsea Hutchinson. I was immediately taken by her warmth before I even realized who she was. Mylissa lost her sweet son Dallas to SUDEP shortly after we lost Josh. Mylissa, who works with children with special needs, has her own serious medical issues while her husband Jeff lives with epilepsy. Through all their pain and sorrow, they have been caring, rational, and strong advocates for SUDEP and epilepsy research. When faced with a very strong willed Neurologist vehemently opposed to admitting that SUDEP does exist, Mylissa spoke calmly and so eloquently that the defensive doctor became speechless, showed his sympathy for their loss, and even more, became a bit more open minded.
Such loving families who have suffered so much in a short lifetime and put off such a positive energy and feeling of love!
These are people that give me hope!
Sending you all Hugs!
Sherri
I think back over this journey in epilepsy that started for us in 2006, and the beautiful people we have met through it. Two little guys I greatly admire are the Epilepsy Ninja Brothers. Nicky and Jordan are brothers who each have a different form of epilepsy. Nicky's seizures come in the way of auras of light and incapacitating pain. The poor little guy has been in and out of the hospital having more tests done than a little guy should, and we're not gettin much helpful information from the effort, but he charges onward with a huge smile on his face.
We met the boys along with their wonderful mom and dad after Joshua died from SUDEP. It was their early encouragement and support that brought me here today. We have met for ice cream, chatted and cheer each other's efforts to fight epilepsy. Of course, this leads to big squirmy hugs all the way around at the National Walk for Epilepsy the last two years. The boys are video stars bringing great awareness at such a young age. Oh, how I admire their courage and that they show no fear in their advocacy for epilepsy research.
The boys are such balls of energy, and you can't help but laugh when they're around. Such great kids, who could choose to be sad or greatly limited by epilepsy but who choose to champion over epilepsy and the side effects of seizures.
http://www.youtube.com/watch?v=XqAbf76vpM8
Then there's Mylissa who is a fellow Danny Did Ambassador who I met last year at an epilepsy walk in memory of Chelsea Hutchinson. I was immediately taken by her warmth before I even realized who she was. Mylissa lost her sweet son Dallas to SUDEP shortly after we lost Josh. Mylissa, who works with children with special needs, has her own serious medical issues while her husband Jeff lives with epilepsy. Through all their pain and sorrow, they have been caring, rational, and strong advocates for SUDEP and epilepsy research. When faced with a very strong willed Neurologist vehemently opposed to admitting that SUDEP does exist, Mylissa spoke calmly and so eloquently that the defensive doctor became speechless, showed his sympathy for their loss, and even more, became a bit more open minded.
Such loving families who have suffered so much in a short lifetime and put off such a positive energy and feeling of love!
These are people that give me hope!
Sending you all Hugs!
Sherri
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