LAL Deficiency (Lysosomal Acid Lipase Disease) & Wolman Disease patient support
My son is 4 1/2 and has Autism and LAL. He has his first treatment this past week. He can not communicate with me how he feels about any of it. Can you tell me what your boys have said, or how the treatment has made them feel? I would love an inside look into what my son is feeling.
Thats great to hear. My son had a port put in, and I use the numbing cream so he doesn't even seem to notice when the IV goes in. He is going to do every other week with no end time. This all is so new to me, so anything you can tell me is so helpful! He was just diagnosed in Dec the same week the Kanuma was FDA approved.
The payment of it completely overwhelms me, I have been told that it cost like $300,000 a year but our Insurance covers at 100% after our high deductible is met. However, I am nervous that we will get a huge bill at some point. After the diagnosis I didn't have much time to process before all the treatment started. Since our son is the only one that has it at our children's hospital I obviously have no way to find someone to relate! I can't imagine what it must feel like for you having 4 of your babies going through this. We found he had an enlarged liver when he was a baby, had done every test possible including liver biopsy for the past 4 years with no answer, then this summer we did the genetic sequencing and found our answer.
Thank you, you have been so helpful. It has been nice hearing from someone who even knows what LAL is!