Introducing my family

[Rebecca Trendy]

Hello everyone! My boys have been struggling with liver and cholesterol problems for over 9 years now, and it took years of testing to finally get our dignosis this past May. All four of my boys (17, 14, 12, & 10) have LAL D. We started treatment in October 2015, and we are absolutely thrilled to see the results! I would love get to know each of you and your stories. How everyone else is coping?

[Donna Lee]

I'm just writing to welcome you to our group. I'm so glad to hear that things are going so well now!

[Nicole]

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.  

[Rebecca Trendy]

Honestly, they have never complained once. They tell me that it is like having a regular iv. I am currently sitting with my boys receiving treatment, and other than being bored they are perfectly fine. The iv poke is the worst part of it all. Dakota and Charlie have gone to sport competitions directly from treatments, with absolutely no issues.

[Nicole]

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.  

[Rebecca Trendy]

Well it has been a long road for us, but we ably started treatment in October. We haven't done ports yet due to the boys being in swim season. We have to wait until the season is over. Our insurance just approved coverage but it only covers 70%. Think of the cost times four 30% is still more than we make in ayear, so we got LASH. It covers the remaining cost with a copay of $5/kid/infusion. So about $40/month for us. I am going to look into social security. We may have been dealing with this for 9 years, but to be honest it is all new to me too. Kind of a whirlwind to be honest.

[Nicole]

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.  

[Rebecca Trendy]

I am also looking into PSI. They may be able to help with deductibles and copay's, but talking to them on the phone, sounded like it was for meds only. But I am going to try anyway. It might be worth looking into for your deductibles.

I think of how blessed we are to have children at all. A lot of these kids don't have 4 to 9 years to figure it out. My oldest is 17 and it's been 9 years! Brendan has been told we only had about 3 years before he hit liver failure. This whole thing is just blowing my mind.

Another thing... The boys are eligible for make a wish. You should check into that too. They need to be approved before they are 18, and it needs to be fulfilled before they are 21. (at least here in MI)

[Nicole]

Thank you, you have been so helpful.  It has been nice hearing from someone who even knows what LAL is!  

[Lisa G]

Welcome!! : )

That is great news that your son's are receiving treatment. We are still waiting for Kanuma to be approved in Canada. Hopefully soon.

[Rebecca Trendy]

Is your child able to receive the drug through trial purposes or are you being denied completely?

[Lisa G]

I haven't heard of any trials going on in my area.

[Rebecca Trendy]

Our doctor contacted the pharmaceutical company to put our boys in a medical trial before it was FDA approved. I am not sure if there is a trial anymore, but it is worth a try. I will be praying for your child will be able to get treatment. If I can help in any way, let me know what you need. I can write letters, make phone calls, etc. Whatever you need, we are all in this together.