Bentley's 'Kanuma Matata' Fund :)

'Kanuma Matata' is our way of saying, 'Hakuna Matata' (it means, No Worries)  Bentley is our 8 year old, sweet, full of energy son! After years of testing, digging and being ill, he was diagnosed with a rare genetic disorder called LAL-D. (Lysosomal Acid Lipase Deficiency). He is missing the important enzyme that breaks down the fat, causing fatty deposits on his liver, spleen and cardiovascular system. Ultimately this could cause liver failure. He is currently receiving infusions of the medicine Kanuma every other week. This is a 3-4 hour process every two weeks. This medicine is roughly $350,000+ per year!! Thankfully we have insurance, so some of the costs will be covered, but not all. We are asking for prayers! Lots of them! The side effects range from mild to severe, and we don't yet know how it will be for him long term. The thought of this process is heartbreaking for us as parents. Bentley is very much aware of what’s going on now.  We talk to him before each visit with the dr, and before each lab draw. I have been contacted by many friends who want to help and send things, so I feel this is the easiest and safest way. I will update regularly! We know a cure is a long road, but we are hopeful! But for now, we are moving forward with treatment in hopes of no further liver damage. Thank you so much to everyone for the prayers, love and support! http://www.laldsource.com/ http://www.facebook.com/kanumamatata

Donations

  • Christa Smith 
    • $25 
    • 2 mos
  • Cynthia Castonguay 
    • $20 
    • 15 mos
  • Myra Michelle 
    • $25 
    • 20 mos
  • Linda Tidwell 
    • $25 
    • 20 mos
  • Amanda Hilbig  
    • $25 
    • 21 mos
See all

Organizer

Lisa Diaz 
Organizer
Pittsburgh, PA
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