Jensen’s Story

Site created on November 17, 2021

Jensen was admitted to the St Marys Pediatric ICU for a severe case of RSV on November 14th 2021. That resulted in us being sent to the Mayo as well for investigation into neurological and possible Genetic work ups.

On Feb 23rd, 2022 Jensen was life flighted to the Mayo due to seizure activity and apneic breathing. He was again vented.


In Early April 2022 the Mayo officially gave us a diagnosis. Jensen had whole exome sequencing done and they were able to find that he has a mutation of his GPAA-1 gene that is the underlying cause of his medical issues including developmental delay, seizure activity, and severity of his illnesses. He is the first patient that the Mayo has ever had with this particular mutation and they are unsure of any other cases worldwide. They have a genetic specialist with 30 years of experience in research and study of the parent of this type of mutation and she is considered to be the world expert in her field. She will be taking over his case from a genetic standpoint. 

In September 2022, Jensen was again life flighted to St Marys Duluth for a severe rhinovirus case where he was placed on supplemental oxygen after apneic breathing and high fever.

After staying healthy all winter in May of 2023 Jensen got a respiratory illness. After 3 trips to the ER, one involving life flight, and having to be resuscitated by CPR during one event we discovered his seizure control medications basically stopped working. After 5 days in the hospital Jensen recovered and is stable on new medications. More specialty teams have been added to his case.

After 3 hospitalizations in May and early June for seizures Jensen was put on a medically prescribed ketogenic diet. Since starting keto we have seen a huge reduction in seizures and Jensen has made a ton of improvements in strength and eyesight. He has started rolling all over the place starting to try to crawl!

Seizures seemed to be the biggest problem of 2023 up until November. Late November Jensen got RSV once again and it developed into Bacterial pneumonia.

2024 started off with Jensen coming off of the Keto diet due to intolerance. We also are still battling seizures but have made adjustments to his medication including adding a new one for better control.

In February, Jensen got COVID as did the rest of the household. He ended up on a ventilator and flown to Duluth for additional support.

March came and due to some complications of Jensen’s medications we had to discontinue his Valporic Acid, his most effective medication. About a week later while trying to start his new medication Jensen had a cluster of 12+ seizures one afternoon. We ended up at the Mayo via lifeflight overnight for monitoring and to give IV medication to assist.

Newest Update

March 11, 2024

Journal entry by Ryan Kingsley —

Well that may have been the fastest trip down and back we have ever had. Once Jensen made it to the Mayo they decided the best course of action was to give him an infusion of his new medication to get him boosted to therapeutic levels. In addition they hooked up an EEG to make sure the med was working and he wasn’t having a bunch of seizures we were not seeing in the background. After about 9 hours on the EEG they came in and told us the medication worked like they thought it would and he hadn’t registered any additional seizures! We got released about 3pm yesterday and made the drive home! We will be working with outpatient neurology to make sure we are getting his medication levels dialed in better but for now we are happy to be home. 

The Kingsley’s 

PS, photo is from this week two years, right before he got his G-tube! 
Read More of the journal titled "March 11, 2024"
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