As those close to me may know, my youngest daughter Zoey has been sick after sick since about 11 months of age when she caught RSV, Covid, and Influenza within a 3-week period around Christmas 2024.
Things seemed to be going well other than the frequent cold or tummy bug, but nothing major that concerned us. Then, at the end of April 2025, she started to have recurrent episodes of loose/watery diarrhea that soon turned to a pale yellow color but was still abnormal for her.
I ended up taking her to a local pediatrician who only focused on her diarrhea and dismissed my concerns about her weight gain, muscle tone, energy levels, and appetite. He spoke a quote I will never forget, “If I had diarrhea every day, I’d be losing weight too.”
This was an ongoing battle, and even though he dismissed us, I took her back for follow-ups to show him that his recommendations were not helping and there’s something else going on. This doctor saw her a total of, I believe, 4 times, with little to no help.
Then, on June 4th, I called her primary care office to get a second opinion and saw a provider who had seen her frequently before and actually listens. This provider WAS concerned about all of her symptoms and not just one. We did labs, and she contacted a pediatric GI from out of state to discuss Zoey’s symptoms. The pediatric GI told the provider to have us come to UW Madison Children’s Hospital for further work-up, which was very scary.
My boyfriend and I then packed all 4 kids’ bags of clothes, took the older 3 to grandma’s house, and we headed an hour away with Zoey.
Once we got to the hospital, we checked into the pediatric ER and then got admitted on June 4th, 2025, where we are still hospitalized as of today. Our discharge is currently ‘to be determined.’
The lab work Zoey had showed her liver enzymes to be elevated, her lactate to be very high, and some other abnormal testing.
We have had many different departments evaluate Zoey, including GI, Genetics, Nutrition, Physical Therapy, Occupational Therapy, Neurology, Neuromuscular Neurology, and probably a few more, but it’s all starting to blur together.
All the different evaluations helped the large team of providers discuss and create a plan of testing, which is where we are now. We have so many lab tests outstanding that we are waiting on results, but the main things that they are thinking are:
- a metabolic disorder including mitochondrial disorder
- ethylmalonic encephalopathy
- lysinuric protein intolerance
- CDG1b
- GSD1b
All of the above sound very scary, very rare, and Google is not a friend of mine. We have been struggling with the unknowns emotionally, mentally, and physically and are trying to take things one step at a time, but it is hard.
Dustin and I both want to be there for our baby during this time, which will cause financial strain on our income.
I’m not normally one to ask for help, but I’m at that point and would appreciate anything.
These funds will help with gas money, utility/bill expenses, food, and whatever medical expenses may arise with what’s to come.
Thank you for taking the time to read and please send good thoughts, love, and prayers to our family during this difficult time.