Hope For Aaliyah

At 15 months, Aaliyah was diagnosed with a rare brain disorder called, Schizencephaly.  This disorder is where there are abnormal slits or clefts in the cerebral hemispheres of the brain. People with clefts in both hemispheres commonly have developmental delays, delays in speech and language skills, seizures, and problems with brain-spinal cord communication. Which Aaliyah has 4 of 4, Epilepsy being the biggest monster of all. We have watched our little girl go from a normal little girl who runs, jumps and plays to a complete zombie staring off in space. We have tried all the big pharma drugs, combination drugs (what she is on now), surgery having a VNS stimulator placed, then a second surgery for an upgrade and now she will be undergoing her third surgery in a few weeks. It's been extremely challenging to say the least. She reauires a full time parent with her which Des (God Bless my husband) has earned his wings by sacrificing his all to be her care giver. We have exhausted all avenues when it comes to pharmaceuticals and all we want is to give our little girl the quality of life she deserves. She is full of Gods joy! She brings our family so much love and happiness. All I want is to find a cure and lessen the activity in her brain. Her grand mals have increased to 4-5 a week. And she has about 10-15 small seizures a week. I'm afraid her heart can't take this much longer. Her breathing is spastic and heavy at times and my baby deserves to live life without this monsterous disease that alienates her body. We have been given the okay and a prescription for CBD oil by her Neurologist at the UT Health Science Center. Unfortunately, insurance does not cover it and there are no patient assistance programs for this. It will cost us anywhere from $400 to $1200 a month until the FDA approves it. Then insurance will cover but until then we pay out of pocket. Charity is never something I would ask for but it's not for me. It's for my Sunshine who I love more than life itself. If you can donate, we are forever grateful to you. Help End Epilepsy.

Donations

  • Aurora Sandoval  
    • $50 
    • 25 mos
  • Adela Rubio 
    • $25 
    • 25 mos
  • Anonymous 
    • $100 
    • 25 mos
  • Ismael Robles j 
    • $100 
    • 25 mos
  • Anonymous 
    • $50 
    • 25 mos
See all

Organizer

Rachael Robles Chretien 
Organizer
San Antonio, TX
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