Jensen Kingsley

First post: Nov 17, 2021 Latest post: May 9, 2024
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.