Kylie Rose fights Epilepsy

33099028_153808184198202_r.jpegMy daughter, Kylie Rose, has been fighting epilepsy since she was 3 months old. She  was diagnosed with Dravet Syndrome, a catastrophic form of epilepsy, at 2 years old after taking a genetics test due to me also having epilepsy as a child. DS kids have a high risk for SUDEP, Sudden Unexplained Death in Epilepsy, due to uncontrollable and prolonged seizure activity. We’ve tried several seizure drugs that were more to her detriment than progress. Kylie currently takes Keppra and Onfi. As a side effect of taking Onfi since age 2, she currently has little to no speech and other developmental delays. Kylie Rose celebrated her 4th birthday September 17th in PICU at Children's Hospital where she has been admitted 5 times in the last 2 months. On average, Kylie has 4-8 seizures daily. Her neurologist finally agreed to ween her from Onfi but suggests we introduce another drug to pair with Keppra. At this point, I am strongly against treating Kylie with any more drugs. I suffered with epilepsy from infancy until age 5; My mother chose homeopathic treatment for me rather than drugs. Kylie was recently tested by a homeopathic doctor in Hollywood, Maryland. I believe she can be healed with homeopathic care but the costly treatments are not covered by her insurance provider. Due to the nature of her epilepsy, Dravet Syndrome, Kylie requires 24/7 monitoring which prevents me from leaving her side. Therefore, my husband handles our finances by himself. I’m humbly asking for help to give my daughter a chance to grow up free from epilepsy. Thank you #KylieRose #EpilepsySucks #SeizuresSuck

Donations ()

  • Fatima Yankey/ Premier Designs Jewelry 
    • $25 
    • 13 mos
  • Fatima Yankey 
    • $25 
    • 13 mos
  • Deena Cunningham  
    • $50 
    • 14 mos
  • Anonymous 
    • $50 
    • 14 mos
  • Amina Green 
    • $100 
    • 14 mos
See all

Organizer

Ruqqiayah Sabour Glover 
Organizer
Riverdale, GA
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