Operation Jumpstart Jackson
Organized by: Jessica Spence
Hello I am the mom of a 13 year old boy named Jackson, but I call him Jack. When Jack was 4 1/2 years old he came to me dazed one day saying "I am all wet" Impatiently and not thinking at the time I told him Jack you wet yourself so of course you are wet. I changed him and did not give it another thought until the next day. I hear my 6 yr old daughter yell at Jackson on the veranda, " EWW Jackson you peed on me!" Than suddenly she was screaming, " Mommy help! Jackson is turning blue" As I ran to them I thought Jackson was choking on something. It looked as if blue saliva was coming from his mouth. I tried to reach into his mouth but he was shaking and his jaw clamped tight. I soon realized he was having a seizure. The first one of many, many. That was the day our lives changed forever. Jackson was eventually diagnosed with medication resistant Temporal Lobe Epilepsy and Frontal Lobe Epilepsy. This means he has seizures that start in two different parts of his brain and his brain likes having seizures so it figures out how to fight whatever medicines the doctors give him to try and control them. We have lived all over and I have taken Jackson to some of the best neurological teams in the country. He has been on 12 different cocktails of medication. He currently has a toolbox of daily meds, emergency meds, and oils to try and control his seizures.He has had status epilepticus 3 times.He would have died but they put him in drug induced comas to stop the seizures.We went to Seattle Children's Hospital in September 2015 for a Video EEG, CT, MRI and numerous other test. He has been scheduled to return on June 5 his birthday for another VEEG and a SPECT scan to see if the doctors can pinpoint exactly where Jackson's seizures originate from and to see if those pieces can be removed with minimal damage and long term side effects. The test itself is scary. They will get Jackson all wired up and than wait or make him seize than inject a dye that will send tracers to the part of the brain the seizures start from. Than a special machine will light it all up. If the pros outweigh the cons we will move forward with a two part surgery..Because of how severe disorder is and because he has more than one type surgery may not stop his seizures completely. Jackson says, "Lets do it! We won't know until we try!" One thing the doctors were pretty certain on is that if we do nothing Jackson will be lucky to live to young adulthood. Every seizure we run the risk of losing Jackson and since those happen daily.... The seizures and medications affect Jackson"s memory, moods, balance, emotions, behaviors cognitive ability....the list goes on and on. When Jackson has to take emergency meds to stop the seizures(Often he will go into one after another) he begs to go to the hospital because he knows the medication changes his behavior and he doesn't want to put his family through that. The doctors say one of the risk of surgery is it can change his behavior and affect his long and short term memory.He will need therapy to help with relearning and getting used to some of these life skills and develop coping skills. Jackson has seizures almost daily. Sometimes they are short ones called Complex Partial he can have 30-40 of these a day. He gets terrible migraines that make him vomit.He has clusters of night time seizures. Sometimes he is looking right at me and this screaming type noise is coming from him. Other times his face is buried in the pillow and the only thing that makes us aware I believe is the grace of God.He also has tonic-clonic clusters in the day time. The astronomical cost of all this along with missed days from running my business to escort Jackson to Seattle for the testing and again for the surgery and post op appts is why we are doing this fundraiser. As a single parent with two children I receive no support from my ex-spouse. We turned our garage into a commercial kitchen that I do a delivery bakery diner from. Allowing me the flexibility to help care for my family, financially and emotionally. If you cannot donate please keep Jack in your thoughts and prayers. We really appreciate it.