After multiple attempts to find a conventional solution have proved unsuccessful her parents have decided to take Aven to Colorado to work with the Realm of Caring ( http://theroc.us).
Once registered in Colorado, Aven will be able to try Charlotte’s Web an oil derived from the cannabis plant. It is very low in THC and high in CBD. Families from around the country have seen amazing results in seizure control after using this oil. (Read Charlotte Figi’s story here: http://www.cnn.com/2013/08/07/health/charlotte-child-medical-marijuana/ )
Aven is registered in Vermont to use cannabis or medical marijuana, but the oil from this special hybrid is not available in Vermont. Since marijuana is classified as a schedule 1 narcotic it is impossible to bring the Charlotte’s Web oil across state lines. This means that while living in Vermont, Aven , is unable to access the medication that may stop her seizures and may save her life.
Aven is scheduled to meet with doctors in Colorado on July 10, 2014 to begin the difficult process of accessing Charlotte’s Web. Her parents will have to drive her from Vermont to Colorado, a four thousand mile trip. Due to a complication of her condition which requires she be no further than 15 minutes from emergency medical care air travel is completely ruled out. However, driving also makes this a dangerous journey for Aven and her parents. They will need to follow a sometime convoluted route to keep her as close to cities and towns as possible as well as always being mindful of mile markers and locations in the event that they need to access medical assistance.
After the initial appointment they will return to Vermont to wait until plants are grown especially for her and the oil available. Once the oil is ready, probably early this fall, Aven and her parents will put their Vermont lives on hold and once again make the journey to Colorado where they will have to live while she tries the medication...a minimum of three to four months and perhaps longer.
This is going to be an extremely costly endeavor!
Aven’s insurance will not pay for any of her expected medical expenses or for the Charlotte’s Web oil. In addition to medical costs and doctor visits, this initial trip will require that they secure a vehicle that is reliable, fuel efficient, yet large enough to accommodate the family of three and at least one other volunteer driver. Though they plan to drive as many miles as possible each day their progress will depend on many factors...whether Aven has any seizures, weather conditions, exhaustion, and not the least of these...traveling with a two year old. They expect that there will be at least ten days on the road going to and fro.
The initial trip in July, is only the beginning. When the family returns to Colorado in the fall they will have the same travel challenges and expenses, but they will then add the cost of living in Colorado while still meeting their obligations in Vermont. A leave of absence from work will allow the family to stay together, but it will also mean several months without reliable income.
Aven’s entire family is very hopeful that soon it will be possible to get this life altering...and life saving...oil in Vermont, and it will no longer be necessary for families to relocate in order for parents to obtain the medical care their children need...but until then we humbly ask for your help in getting Aven and her family to the oil in Colorado.
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