Fundraiser takes place April 30,2011 3:00 PM until Closeat Sayde's Restaurant 136 Cluff Crossing Rd. Salem,NH.
Owen Launier was born on September 3, 2006 a perfectly normal and healthy little boy. At the age of 6 months, Owen had his first seizure and was flown by helicopter to the Children's Hospital in Boston, Ma where a battery of tests were performed. At the age of 1, Owen was diagnosed with Dravet Syndrome which is a rare form of intractable Epilepsy. Owen is now 4years old and suffers from multiple seizures on a daily basis. Owen often stops breathing while he is seizing and has needed mouth to mouth to get him back on a couple of occasions.
While Owen is unlikely aware of the seizure activity, it severely impacts his quality of life. Owen was recently granted a wish from the Make-A-Wish Foundation. They gave him a massive swing set with three slides and two clubhouses. Unfortunately, Owen can't enjoy it because the excitement causes him to have seizures.
Owen sleeps with his mom (Cindy) and his dad (Scott) because he has been found seizing in his bed in the morning. He can not be left alone for even a minute.
Our goal is to provide Owen with everything that we can to make his life a little easier for him. There are two medications that are currently not approved for use by the FDA that have been tested and proven to be successful on many children with Dravet.
One of the medicines is called Stirripentol and is only available from Canada and France and will likely cost about $1,500.00 a month. The other medicine is called Clobozam and will cost anywhere from $250-$500 a month.
For $15,000.00 Owen could have a seizure dog for life. This dog would have the capability of warning his parents up to an hour in advance of a pending seizure. This dog could also be trained to alert emergency personnel and could also activate an implanted vagus nerve stimulator (VNS) to stop a seizure. Another thing that would help Owen would be a bigger bedroom and bathroom. Owen often has his seizures in the tub, again due to the excitement and temperature change. The bathroom is too small to administer emergency medicine or attention requiring him to be moved to another room. Owen is not getting any smaller and will be sleeping with his parents for the foreseeable future. Emergency personnel were not able to fit around their bed in their small bedroom during his last seizure costing valuable minutes of life saving attention. We would like to provide him with a larger bed so they could sleep comfortably and a larger bedroom so that EMT could have easy access to him.
Although I know we probably can't give Owen everything he needs, I know that there are a lot of great people out there that can and will help to make this fundraiser a success!! We will be selling rubber bracelets for the cause, there will be a $10.00 donation at the door, we will be selling raffle tickets and hold a silent auction, (anyone looking to donate a gift certificate or gift basket, please do so), there will be food all day and night (people are encouraged to bring an appetizer, meal or dessert, so that there will be enough food throughout the whole event). Let's get together to make some magic happen for this little boy. Anyone interested in volunteering or to making a donation please call Sayde's Reataurant and they will give you more details. 603-890-1032. Thank you, thank you, thank you!!