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Our force to be reckoned with....

Writer's picture: Heather Bensten SchoneHeather Bensten Schone

This weekend we went to watch Lil swim against William & Mary. We love any chance to see her, and W&M is so close, and such a cute campus. But the stars sorta aligned, since it was also her first time competing since getting really sick again. 


I can’t even remember if I have written about Lil’s health struggles…. It started in 2020. She was a senior in high school, swimming competitively and living a very normal life (Well, aside from the pandemic!)  She started having aches in her arms and legs, and weakness.  I honestly didn’t think much of it. I think my initial reaction was that she was worn out from swimming so much. I suggested she take a bit of time off.  When that didn’t fix things, we went to the pediatrician. The doctor didn’t seem overly concerned, but she did order blood work.  Everything looked good, aside from her Ferritin level. It was freakishly low. But her iron counts were not low….which was weird. Regardless, she started taking iron supplements and I sorta scratched it off my worry list.

Except, she didn’t feel better. In fact she felt worse. And when we did repeat blood work, her Ferritin had dropped even lower. We were sent to a hematologist. They did some crazy tests, including taking blood every 15 minutes while Lil exercised. I think they were zeroing in on her lactate pyruvate levels. The hematologist was wicked smart, and I had trouble comprehending everything she said. But she personally called a neurologist to get us an appointment, and even my feeble mind knew that that was not good!! The neurologist was amazing, and explained that he thought Lil had mitochondrial dysfunction….and he wanted to run more tests. They did a brain MRI (and they made her wear a mask- I would have died right there in the tube!) He sent us to some specialist to do a test that literally involved sticking her with needles all over her body- I think they shocked her a few times too- something about muscle response….seemed like medieval torture to us!  Then they sent us to Children’s Hospital to do genetic testing. That appointment might have been the craziest yet.  They were just asking us a bunch of questions, and then asked to see a picture of “Liliana’s father”. I opened my phone, and they responded “We need to see him immediately”. We had no idea what they could see in the picture, but the next week, 50 year old Lance had an appointment at Children’s….he didn’t even fit on the exam table. Ha!  He did genetic testing too.


Anyway, after so many appointments, so many blood draws, so many inconclusive results, we learned that Lil is a carrier for Muscular Dystrophy, but she does not have Muscular Dystrophy. And she has Mitochondrial Dysfunction- and when it flares, she feels awful. 

They prescribed lots of pills. And after about 4 months, she felt great. She stayed on the meds until mid 2023, when she decided to gradually go down and see how she felt. She felt great. We were all so relieved.


Lil was super excited for the 2024-5 swim season. She loves Davidson, she loves her team, and she really struggled with her strength freshman year and half of sophomore year- so she trained super hard this summer and went back to campus in the best shape of her swim career.  About a month and a half after returning to school, she thought she felt the aches coming back. But it had been such a stressful experience when her mitochondria flared previously, she wondered if she just had some soreness and was panicking. So we gave it some time. The aches kept getting worse and she would cry in her goggles cause practices were so painful. Something was not right.


I think I mentioned flying her home when she had 2 botched blood draws in North Carolina. Long story short, she was indeed having another mitochondrial flare up. Thankfully one of our doctors had a new plan, that would hopefully help her condition resolve a little more quickly this time. In November she started antibiotics (which she had not done previously) as well as steroids. And lots of vitamin supplements and nutritional supplements. (So many that we had to get special permission from residence life to have an extra fridge in her dorm room!!)

It took about 2 months, but by the time she left for training trip on January 1- she felt good. But man did I worry. If she weren’t a collegiate swimmer, she might not have these pains. She taxes her muscles so much…but I would never even suggest she stop swimming. It’s such a huge part of her life.


As we drove to Williamsburg Saturday morning, I got a call from Lil. She was choking back tears.  She was scared. She thought she felt better, but what if it was too soon to be back competing. I think there is such a huge mental component and she likes control. This condition has really taken its toll on her confidence in her body. 


Well, both her races went great. Such a huge sigh of relief.  


We don’t really know if or when her body will boycott again. All we can do is try to pay attention to any type of pattern, and stay on top of her health and nutrition. (I personally think there is a correlation to her getting a vaccine. And I think some of her doctors agree with me. But she never had the issue when she was little and got so many vaccines, so why now?) Her conference meet is in February, so if we can make it a month with no symptoms, I will be very grateful!!!


Honestly, after seeing all the specialists and all the really sick kids in the waiting rooms, I am actually a little bit grateful for mitochondrial dysfunction. I know it sucks for her, but we know it could be way worse! She lives a pretty great life, thanks to amazing doctors!


I was so proud of her this weekend. It takes a certain type of crazy to swim in college- and an extra splash of crazy to keep swimming through health issues. But I am pretty sure nothing is gonna stand in my girl's way. I always say she is a force to be reckoned with…..


Anyway, this week we are celebrating the DC Panda’s being open for visitors! I am excited to go see them at the zoo (once the weather warms up -- the pandas are probably the only ones enjoying this insanely cold weather!)


xo,

heather




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