Bentley's 'Kanuma Matata' Fund :)

$4,450 of $25,000 goal

Raised by 91 people in 37 months
'Kanuma Matata' is our way of saying, 'Hakuna Matata' (it means, No Worries) 

Bentley is our 7 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 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
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I know I dont post here much. But the GoFundMe is attached to his Facebook page, which I update often. Www.facebook.com/kanumamatata We always thank you all for your love, support and prayers! :)
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This is our life....
As the Holidays approach, I think we all get a little more emotional. Regardless of which emotions you feel, you have more around this time of year. This is our second Holiday season juggling our little family, work, doctors visits, treatment schedule, school, homework, daily life... it's hectic sometimes. Sometimes we all agree that we wish we didn't have to do this anymore. But, on the other hand, we have met so many families that don't have the medicine available for them. Today, we are thankful. Thankful that we have this amazing chance for our sweet boy. Thankful that we have this crazy, chaotic life. Thankful that this medicine will give him a chance to fulfill his life dreams. Thank you for always praying for our family ❤❤ #lald #raredisease #livingwithLALD #thankful
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I usually update Bentleys Facebook page, not here. But we have a lot of new followers. Bentley is doing good overall!! The medicine has kept his liver from changing. His cholesterol is still super high, and his iron super low. We change his diet and he's on vitamins, but his body can't process those two, so they really don't help! He has headaches and stomach aches, his 2 biggest complaints. But, he's such a happy, active blessing!! We love him with our whole hearts. We appreciate each and every one of you!

https://www.facebook.com/Kanumamatata/
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Bentley has been doing well! The treatments are great and we see improvement in his labs. He has been released to play soccer and is loving it! We are so thankful for the issue journey. Without his diagnosis, we don't know what could have happened. We love our little Prince and are thankful for every penny donated! Thank you!!
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Read a Previous Update
Michelle Lea
36 months ago
1
1

Sending prayers for Bentley!

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$4,450 of $25,000 goal

Raised by 91 people in 37 months
Created July 7, 2016
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$20
Cynthia Castonguay
4 months ago
$25
Myra Michelle
9 months ago
$25
Linda Tidwell
9 months ago

Because I know pop w is hard

AH
$25
Amanda Hilbig
10 months ago
KU
$75
Kay Ullman
14 months ago
JC
$100
Josh Chambers
19 months ago
AS
$25
Andrew Schneider
20 months ago
$50
Anonymous
21 months ago
KU
$50
kay ullman
22 months ago

Prays for you Bentley and your family..

$35
Michael Jeanis
22 months ago
Michelle Lea
36 months ago
1
1

Sending prayers for Bentley!

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