Infantile Spasms/West Syndrome



Hawk was born on November 13, 2012, a healthy typical little bundle of joy. We tried to get pregnant for 5 years and he was the product of our second round of IVF. So we were on cloud nine when God blessed us with Hawk. Then suddenly at 3 weeks old, Hawk had a massive spontaneous brain hemorrhage that we discovered through a head CT after he started vomiting and having seizures. Life as we knew it halted and we were life flighted to Egleston Children’s Hospital of Atlanta. He was admitted to the Pediatric Intensive Care Unit where we would stay for 4 weeks. Hawk was put into a pentobarbital coma for 2 weeks because they could not stop the seizures. A enter-ventricular drain was placed in his brain and injected with tissue plasminogen activator to break down the clot and drain the blood. The blood created scar tissue which lead to obstructive hydrocephalus and shunt placement. It also lead to massive brain damage which has resulted in seizures, among many other issues. Hawk currently has IS or Infantile Spasms/West Syndrome, one of the mose catastrophic types of seizures. He was already fighting to overcome the brain injury and was progressing a little, but then when the IS started he regressed quite a bit. Hawk cannot visually track objects, sit, stand, talk, hold things, or eat enough by mouth to nourish himself without a g-tube. We have tried and failed phenobarbital and neurontin. He is currently on keppra, topamax, the ketogenic diet, and klonopin as an acute medicine. The diet has helped more than any medicine, but he is still seizing and has recently developed a new type of seizure. We are hopeful that Hawk can live a full and happy life as long as we can fight off these seizures that keep robbing him of all his hard work. He is a happy and sweet baby and we love him so much. We are just parents pushing for what’s best for our love and we believe that cannabis oil could be the best for Hawk. We need legal access to cannabis from a safe, reliable source and that is currently only found in Colorado and California. Our only other option is to move to one of these states and leave our home behind. That would include leaving Hawk’s neurosurgeon, neurologist, nursing, insurance, and most importantly, his Dad. We should not have to make this choice and many others don’t even have the means to have this choice. We believe God has placed Hawk and us in this fight for a reason, this is just a season we are going through with an end that will be glorious for so many children. The day when we take the cannabis plant that God created for good back from satan will be awesome! Satan has been using it for evil for too long and we are ready to see it used world wide for healing! We plead with you to support and lobby for legislation that will legalize cannabis oil for medical use in your state! http://faceofcannabis.wordpress.com/2014/07/17/hawk/ https://www.facebook.com/DoItForHawk

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