- Zoe On Easter Of 2009
I would like to introduce everybody to my 4-year-old daughter Zoe. Zoe has had seizures since she was 4 months old. In January of 2010 she was diagnosed with a rare neurological condition called Dravet Syndrome. Dravet Syndrome, which is also called Severe Myoclonic Epilepsy of Infancy (SMEI), is a very severe form of epilepsy. It appears during the first year of life. The first seizures usually occur with fever and are generalized tonic-clonic (grand mal) or unilateral (one-sided) convulsions. These seizures are often prolonged and may lead to status epilepticus, a life threatening condition where the brain is in a state of persistent seizure. Currently there is no cure for Dravet Syndrome, and the treatment options are very limited. Children with Dravet Syndrome usually experience poor development of language and motor skills, hyperactivity, and symptoms associated with Autism such as difficulties relating to others. They also have an increased risk for accidents, infection, and Sudden Unexplained Death in Epilepsy (SUDEP).
Zoe and I have a huge, EASY favor to ask you. A few months ago I was made aware of an exciting research project that could change Zoe’s life. It is being led by a doctor whose grandchild has Dravet. The goal is to try to “fix” the genetic mutation that causes the condition. The Dravet Foundation is trying to raise funds for this project. You can help. I am not asking you to donate any money. I am asking for your time – less than a minute a day for the next 75 days.
- Zoe In The Hospital Getting An EEG
Please follow this link:
http://www.vivint.com/givesbackproject/charity/45
You have to have a Facebook account, so if you don’t have one, please create one (plus one for your spouse, children, dog, etc.) and please vote everyday. For those of you who hate Facebook, I understand – cancel your account in September. This could make a lifetime of difference for so many remarkable children and could mean $250,000 for research. Please ask everyone that you know to vote. EVERYDAY!
If we win, this is where the money will go. They are also fast-tracking the research so the drug trials could begin in 5 years which is amazing.
http://finance.yahoo.com/news/OPKO-Health-Announces-Grant-bw-340473083.html?x=0&.v=1
Let me know if you need any more information. Also please pass this on to everyone you know. Anyone can vote as long as you have a Facebook account.
Thank you, Stan