Clausen Crusaders

The Clausen Family has received news that no family should have to face. In this difficult time, their friends and family may wish to help out in some way but may not know how. This Go Fund Me account has been started as an avenue to show our love and support. All funds will go toward Bryce's medical care and the occasional meal. 

I cannot begin to tell the story so I will let Bryce's dad, Joel, tell the heartbreaking story. Grab a tissue and hold your kids tight.

Bryce update:
This will be the hardest thing I’ve ever written.

We received the results from the MRI and blood work on Thursday from the neurologist. We had prayed for and wished for and wanted good news and, unfortunately, we did not get good news. Bryce has been diagnosed with a very rare disease called Krabbe disease. There is no cure. And it is fatal. We don’t know how much time we have with Bryce. Studies say that 60% of babies live to 1 year old and 16% make it to 2 years old. He will most likely go deaf and blind. He will never smile again. He will never crawl or walk. He’s regressing and eventually his body will shut down. Most with the disease die of respiratory failure in their sleep. He is NOT in pain. His cries are how his brain tells his body that something isn’t right and not from pain. 

You can google it to find out more, but basically Krabbe disease is an inherited disease. Andrea and I are carriers and when two carriers of this gene have a child there is a 25% their child will be born with it. But also, a 75% chance they won’t be born with it (Levi). Andrea and I had no idea that we were carriers. We did genetic testing, but they don’t screen for Krabbe disease because it’s so rare. Krabbe disease destroys the protective coating of nerve cells in the brain and nervous system. Bryce doesnt have enough enzymes that would help get that bad stuff out of his body. The doctor told us those enzymes are like garbage trucks in your body and he just doesn’t have enough garbage trucks to get rid of the garbage. 

Andrea and I have talked a lot since we found out and our focus is to make Bryce as comfortable as we can. That includes continuing to go to the chiropractor because we think that was making him feel better. We’ve canceled his helmet he was scheduled to get. We’ve canceled his lip tie and tongue tie appointment. One of the symptoms of Krabbe disease is the lack of eating. Bryce has lost weight for 3 months now. We’ve upped his calorie count per bottle but he’s still not eating enough. So, our next step is to get him a G tube in his belly. That way we can get it straight into his belly and he doesn’t even have to worry about the bottle if he doesn’t want it. We are also going to get family pictures done ASAP because Bryce is so handsome right now we want to capture that face before he regresses even more. We are going to get him baptized. We have some pretty amazing folks in heaven waiting to meet Mr Bryce and we take comfort in that. 

I’m not mad or angry. I’m just really sad. This isn’t anyone’s fault. We didn’t know we had this rare gene. We thought we did all the screening we were supposed to do. We didn’t drop him to cause some sort of problem. Nothing happened at daycare while not under our supervision. This is just the really crappy hand Bryce was dealt. He was a NICU baby and just hasn’t caught a break since birth. I’m just really sad for Bryce. He has two parents that have loved him so much for the last 9 months and wanted to love him for so many more years to come. I’m just really sad for Levi because he doesn’t get to grow up with his little brother who is his best buddy right now. He’s sooooo good with him and makes Bryce so happy. I’m just so sad that Andrea and I won’t get to see them grow up together. We won’t get to dress them alike for pictures. We won’t get to break up their fights. We won’t get to see them play ball together or build forts together. I’m just really sad for Andrea and I because this is going to leave a giant hole in both our hearts for the rest of our lives. No parent should ever have to bury their child, but here we are the past day talking about the inevitable. We wanted to talk things over now so that we don’t have to make those decisions while emotionally wrecked in the future. I’m just really sad because this sucks. There’s no reason why it’s happening to Bryce. He doesn’t deserve it, but who does? God doesn’t give more than you can handle, right? Well.... this feels like the weight of the world is sitting on my chest right now. I’ve cried about 6371593635 times in the past 2 days. It comes and goes. It’s hard to look at his handsome face and not break down. It’s hard to see him cry out and not break down. It’s hard to look at Levi and not break down. Andrea and I share a glance and bawl uncontrollably. Andrea has taken this pretty hard (duh) but is the rock of this family and has taken that role with full force. I cannot imagine going through this with anyone else. I love her so much and hate that she has to go through this. As for me.....well, I can’t really put into words what I’m going through. It’s a weird way of life right now. I cry and then don’t. My mind goes a zillion thoughts at a time for a while and then I zone out for a while. I smile when holding my Bryce and sometimes I sob while holding him. I google stuff to try and learn more, but then can’t read it because it makes me sick to my stomach. I don’t wish this on my worst enemy. I’m just really sad. 

For those of you that have prayed and sent your thoughts, we say “thank you”. We have felt your love. Please continue, and I keep saying it....double up your prayers on Bryce and I’ll take mine at a later date. A lot of you keep asking me or Andrea what you can do to help. We don’t need much because there’s not much we can do right now. If you really want to help, send a food gift card for something that can be delivered to our house. We are not much for cooking right now and we really don’t have an appetite either so making us food will probably sit in the fridge and go bad. I know we are supposed to eat, but I’m not hungry and nothing sounds good. I didn’t eat the first 24 hours and Andrea had 2 cookies. That’s about where we are eating wise. 

As for everything else....this is probably the last update we will put out for a while. If you’ve texted or called or whatever and haven’t gotten a response, I’m sorry. It’s just a lot going on and I’m not keeping up with stuff right now. Thank you to my Scott Smith Team for stepping up and taking my clients on. Thank you to our families for dropping everything and coming straight to our house to be with us. Thank you to our friends who have reached out. Thank you everyone for your support

Thank you to Bryce for making me a better son, husband and father. I love you more than you will ever know.