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$12,150 of $28,000
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105 donations

This fundraiser ended on 05/18/12

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The family and friends of Reid Flannery are uniting to raise money for Reids service dog and medical costs associated with Dravet Syndrome.

Reid is an amazing and strong two year old that has no idea that his life is as challenging as it is. Reid suffers from Dravet Syndrome, a severe and catastrophic form of Epilepsy that is not only progressive, but life threatening. Reid will not outgrow this condition and is expected to continue to decline or remain stagnant developmentally.

Reid has anywhere from 100 to 1,000 seizures a day. His entire life is consumed by seizure triggers. He can't play outside because the sunlight causes seizures, he can't play inside because excitement causes seizures, he can't go swimming because temperature changes cause seizres, he can't play around other children for fear of catching a cold or illness that will also result in seizures. Unlike other forms of epilepsy, Dravet Syndrome doesn't respond well to typical seizure medications. Reid has been on numerous medicines and although they work for a while, they typically stop working within a month or so.

Reid has had more seizures than we can count in his short life time. He has been rushed to the hospital numerous times via ambulance for status seizures, seizures lasting longer than 30 minutes. He has recently began to stop breathing during theses seizures. The seizures have affected his speech, his ability to eat which has resulted in his having a feeding tube placed, and his ability to do all the things that little boys love to do. Please join us in our fight to give Reid his life back. We have found a medicine that we are able to get from France that has been amazing. Because it is not FDA approved, insurance will not cover the cost associated with this drug. Unfortunately, the medicine costs roughly $1,000 month. We also want Reid to have freedom to be in another room as he grows without us worrying that he will be having a seizure. For this reason, we are in the process of working with a trainer on training a service dog that will not only alert us to seizures, but also alert us if Reid begins to wander or do something that could harm himself. There are other useful tools that are not covered by insurance that would greatly improve Reids quality of lifeas well, such as an emfit monitor to monitor seizure activity while sleeping, a cooling vest to reduce Reids body temperature while outside, special glasses that reduce photosensitivity to sunlight and flourescent lighting, and of course alternative therapy such as Upper Cervical Care.

To help raise funds for Reids medical needs including the items listed above, we will be hosting a Golf Tournament titled Rounds For Reid at Cannongate Country Club in Sharpsburg, Georgia on May 11, 2012. The cost is $85pp and includes range balls, golf, cart, and lunch. If you would like to participate, please pay entry fee on this site and note in the comments that you want to play. Please make sure to include your email address and we will contact you with details, or you can call me, Jennifer, at 404.514.1638.

For those who are unable to join us in Rounds for Reid, you may still show your support by making a donation to Reids medical fund on this site or email me jennflannery@yahoo.com. Thanks so much for all your support! We could not do this without you. Going through this with Reid has been such a humbling experience for our family. We have found out how important it is to have friends and family rally around you in a time of need. Thanks again!
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