Jim and Heather Johnson from Luverne have been busy parents the past 4 years. I know were all busy, music lessons, swimming lessons, hockey, church, etc....but they have all that, plus they have a wonderful little girl named Luella. Luella turned 5 last month, and her wish was to meet Belle at Disney World. Her mom says now its Belle, Belle, Belle since they got home! Luella, as you may know, suffers from Dravet Syndrome, a form of epilepsy. She is their 4th child, and up to 9 months of age, every thing seemed normal, like the other 3 before her. Then, she suffered a seizure. And another. At first doctors thought it was due to leftover symptoms from a UTI, which wasnt the case. It was epiliepsy. Over the next few years, Luella progressed as every other little girl, hitting all her benchmarks, all the while suffering her seizures, some of which could last up to an hour. Like most children with Dravets she starting experiencing developmental lapses. Shes also FULL of energy, a handful, Heather says. But with newer medication this past Summer, Luella actually went 5 weeks without a seizure, and started school this Fall. She has a full-time para that has been specially trained to administer her rescue meds if a seizure has lasted 3 minutes (a nasal mist - which can be used 3 times before making a trip to the ER). The worry is the lowering of oxygen she receives during her seizures. If the rescue meds dont work right away, they have to get her on oxygen at the hospital. So far, so good this school year. Tonights tip night at Pizza Ranch is not just for the Johnsons, but to also raise awareness for Epilepsy (November is Epilepsy Awareness Month) and Dravet Syndrome. 1 in 10 people in America will have a seizure, 1 in 25 will develop epilepsy. Dravets is rare (about 1 in 25,000), and Jim says its one of the worst forms of epilepsy. Talking to the Johnson family last Thursday, you hear them rattle off statistics, empirical data, and past examples like seasoned pros. Its hard to fathom that its only been a a couple years. Charlottes Web, the liquid cannabis named after Charlotte Figi (time/3264691/medical-marijauna-epilepsy-research-charlottes-web-study/) should be available next year in Minnesota. Right now, the drug cocktail that Luella is taking is working well enough to keep the Johnsons from thinking about moving to a state where its already legal. But if her condition worsened, they would think about it. The upcoming legalization in Minnesota keeps getting pushed back for administrative purposes, for finding the right product, for all sorts of reasons. Jim is worried that the July 1st, 2015 date will get pushed back even further. Both he and Heather were pleasantly surprised it passed as quickly as it did, which is why it will take a while to get implemented, everyone being caught off guard as much as they were. Its a start, Heather said. And tonight is another step. To follow Luellas story, click on Heathers blog: littleluella.blogspot/ If you or a family member suffers from epilepsy, click here for a support group: https://facebook/groups/sfareaepilepsysupport/
Posted on: Mon, 10 Nov 2014 16:16:18 +0000
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