'Kanuma Matata' is our way of saying, 'Hakuna Matata' (it means, No Worries) Bentley is our 10 year old, sweet, full of energy son! After years of testing, digging and being ill, he was diagnosed with a RARE Genetic Disease 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. Thankfully we have insurance, so some of the costs will be covered, but not all. We are asking for prayers! Lots of them! 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!
Bentleys Medical Facebook Page
More info regarding LAL-D