Support Super Luke's SWS fight

On May 6, 2015 my life changed forever when my beautiful baby boy Luke was born. I was elated to meet my new little guy. He was perfect! We noticed instantly that Luke had a port wine birthmark on his face and learned soon after that it was a sign of a more serious, very rare condition called Sturge-Weber Syndrome. We had to take him to numerous specialists within the first 2 weeks and it was confirmed he had SWS which meant a huge risk of seizures , brain damage and glaucoma. Flash forward to July 6, 2016 to when our lives changed forever once again but this time for the worst. Luke had his 1st seizure which ended up being countless seizures back to back, also known as status epilecticus. He ended up in PICU in a medically induced coma for almost 2 weeks and stayed in hospital for 4 months before he was stable enough to come home. During that stay, Luke possibly had a stroke, his vocal chords were damaged from being intubated, he got a deep vein thrombosis from a femoral line that was placed, he needed a blood transfusion , ended up needed an NG tube to be fed and had 100's of seizures that medicines would not control which is known as refractory epilepsy. We ended up putting him on ketogenic diet and that stopped his drop seizures almost immediately. Luke still had focal seizures every 2 weeks and required physical , occupational and speech therapy to regain all of the abilities he lost from the event. Luke still is not walking, hardly talking , has limited use of his left arm due to weakness and still needs NG tube for most of his nutritional needs and medications. He recently started having seizures again that even the diet isn't controlling. His doctor is talking about brain surgery. I asked to try cannibus oil since I've seen lots of success stories. We got his doctor to sign papers but now it's a matter of finances. This is where I/ Luke NEEDS the help ! There is also a special device I'm looking into that may significsbtly improve the use of his left arm and hand. It's called axiobionics and it's another thing not covered by insurance . I'm staying home with Luke full time to provide all of his medical needs so I essentially have NO income. I think to myself " just because we have no money, why shouldn't Luke get EVERY possible chance at a happy healthy life?" There are no guarantees either of these options will work for Luke but I want to try EVERYTHING and will not give up! He is known as Super Luke because he's a true hero. He's been through more in his 2 years of life than most will in a lifetime and he takes it better than most people take stubbing their toe, including me. Please help if you can. Share this link, follow him on Facebook - Super Lukie's Sturge-Weber Story, educate yourself on Sturge Weber syndrome. Help me try to create a miracle for my little boy. Let him be little and grow up as healthy as can be. Help me help him be SEIZURE FREE!

Donations

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  • Lauren Judd 
    • $200 
    • 42 mos
  • Kristen Krugreinhard 
    • $25 
    • 42 mos
  • Carrie Mink 
    • $25 
    • 42 mos
  • Jen Martin 
    • $10 
    • 42 mos
  • Kristy Ellmer 
    • $25 
    • 42 mos
See all

Organizer

Mary Hitchens 
Organizer
Wilmington, DE
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