Mandy & Kaleb Trahan

I want to start this by saying two things.

1-We are not a “gofundme” type of family, but life has a way of humbling you.

2-Kaleb did not know I was going to do this. I’m pretty sure he will be upset with me, but thankfully he is incredibly kind and I’m banking on the fact that he will be forced to forgive me.

For those of you who don’t know, I’m going to give a little bit of background.

Mandy Trahan is my SIL. She is 43 and has 4 young children (the oldest is 11 and the youngest will turn 2 this year). Mandy was the best mom. She literally lived her life for her kids. I know you might read that and think “all moms do that,” but I’m a mom and she blew me out of the water. Her number one focus was her kids.

Her kids were always dressed in the cutest outfits. She didn’t want them spending the night anywhere. She didn’t want to go on dates with Kaleb (her husband) because she didn’t want to leave the kids. There was not a more hands-on mom than Mandy.

She was 100% completely normal and healthy until early 2023 when Kaleb started noticing something weird was going on, but the symptoms were so subtle it was hard to get anyone to listen to him. As her symptoms progressed, we all realized something was DEFINITELY up and we searched for answers.

There were a ton of doctor’s visits, hospital stays, tests, about a million MRIs and even a brain biopsy. She was misdiagnosed for months until her sister demanded a genetic test and we finally got an answer. Mandy has ALSP (adult-onset leukoencephalopathy with axonal spheroids and pigmented glia). ALSP is a terrible disease and it is incredibly rare. You’ve likely never heard of it. Most doctors (even most neurologists) haven’t heard of it. It comes with both physical and cognitive symptoms and life expectancy is typically 3 to 8 years after symptom onset. Mandy is about one year into symptom onset.

Mandy is progressing incredibly quickly. She is losing her ability to speak, eat, swallow and is using a wheelchair to get around. Mandy is going to die. I know that was probably jarring to read. It is jarring for me to type and it is jarring for us to live with everyday. There is no cure. There is currently a clinical trial, but Mandy was disqualified from the trial because her symptoms are progressing too quickly. There is nothing to be done.

We do not need help with medical bills. We need help making Mandy comfortable and happy. That’s all. All we care about is making the remaining time exactly Mandy deserves. Mandy is most happy and most likely to eat when she is with her husband. He is her safe space.

Kaleb will hate me for mentioning this, but he is burning the candle at both ends and has for months without a single complaint. He is patient with Mandy and the kids. He puts all of his focus on making memories for the kids and taking a ton of videos and photos and he is not the type to ever ask for help.

As I’m typing this, he just got off of a night shift and had to bring their 4 year old for a dental procedure. He’s getting little to no sleep and no breaks at all from caregiving because he doesn’t want to spend any time away from Mandy. If he is off of work, he is taking care of Mandy and the kids. He is working a full time job with a difficult work schedule on top of the difficulties that come with Mandy’s disease AND being the only parent to their 4 children.

Kaleb works shift work at a plant in SWLA where he is able to take unpaid Family Medical Leave. Unpaid. As I’m sure you can imagine he has been putting off taking that time because he is the sole provider for his family and because the time he is able to take off is limited and he wants to use it wisely.

If you are able to contribute anything to allow Kaleb to take leave and spend time with Mandy without having the worry of finances looming over him, it would mean the world to us. I understand not everyone will be able to contribute and for those of you who can’t, please just pray. We are asking for this very specific prayer: that Mandy is happy and comfortable during whatever time she has left.

Thank you.