Londyn‘s Story

Thursday, August 8, 2024 Londyn started to develop belly pains. By the next day, she was in so much pain she asked to go to the hospital. Upon arrival, we learned that Londyn had a severe case of colitis, but at the time did not know what had caused it. 

On Monday, August 12th, we found out that she had contracted Shiga toxin-producing E.coli (STEC).  The doctors told us to keep her as hydrated as possible because the type of E.coli she contracted could cause Hemolytic Uremic Syndrome (HUS). But no matter how much she drank, the amount of diarrhea she experienced prevented her from staying hydrated.

By Friday, August 16th, she had stopped peeing and we took her to the E.R. They discovered her kidneys had completely shut down and she had developed HUS. She was very sick, and at this point was beginning to be confused. She was taken immediately by ambulance to a major hospital two hours away. She spent a week in the PICU, receiving around the clock dialysis to begin filtering the toxins out of her body. Her BUN and creatinine levels were off the charts. She was no longer our happy go lucky little girl. She was confused and very angry because of the toxins in her brain. This was the beginning of her 26-day hospital stay.

Once she was stable enough to be moved to the regular floor, she continued to need multiple dialysis treatments each week. She required 3 units of blood. She struggled with her oxygen and was so full of fluid she didn’t look like herself.  She went two full weeks without peeing until her kidneys began to start working again. At that point, they did a kidney biopsy to see how much kidney function she had left. Unfortunately, the damage was worse than expected. She had lost at least 50% of kidney function that she would not get back. We were told in order for her to have a normal life, she would need to gain back at-least 30% kidney function.

Thursday, September 12th, we left the hospital. Londyn was weak and continued to need dialysis in order to keep the toxicity levels manageable. Despite this, she was so excited to be home again with her family all together. At this point she began home-based learning because it was too big of a risk for her to attend school in person with a hemodialysis port. If she would have gotten an infection, it could have been lethal. On top of that, if she gets sick at all, it impacts her kidney function. This has been the hardest part for our social butterfly.

In November, Londyn had her dialysis port removed because she was no longer getting any benefits from it. Dialysis had pulled as much off of her as it could. It was at this time we found out she only gained about 18% of kidney function back. She is now considered to have End Stage Renal Disease (ERSD) and needs a kidney transplant.

Londyn was a healthy, happy little girl prior to this. The worst sickness she ever had was strep throat. E.coli has stripped her childhood from her. Her life has been turned upside down. At 8 years old, she has high blood pressure that has to be monitored daily.  She takes 8 pills a day just to maintain what kidney function she has left. She has to drink 2.5 liters of water every day in order to keep her kidneys functioning. Every two weeks she requires a shot to keep her red blood up because she is so anemic. She constantly gets labs drawn. She is exhausted. For Londyn, the blood clots from HUS solely attacked her kidneys. Besides her kidneys, she is healthy and is the perfect candidate for a kidney transplant. And as of January 2025, this is where we are. Londyn is on the kidney transplant list hoping to find her perfect match! #Londynssearch