When Jake Swoyer was born in 1995, he appeared like every other wholesome child boy. His household—dad and mom, John and Barbara Swoyer, and large brother Ryan, then 3— have been thrilled.
However when Jake, who’s from Sudbury, Massachusetts, was 7 months previous, he had his first seizure. After that, “he acquired very sick, in a short time,” his mom says. His seizures got here often and will last as long as an hour. “We had 23 ambulance rides in that first yr.”
Regardless of loads of testing, medical doctors have been unable to find out a trigger for his seizures till Jake was practically 10 years previous, when a take a look at revealed he had a genetic mutation related to Dravet syndrome. Dravet syndrome is a lifelong, uncommon type of epilepsy that begins within the first yr of life and usually does not reply to medicine. Jake was additionally later identified with mitochondrial dysfunction, including to the severity and complexity of his illness.
Since he was identified, Jake has suffered a protracted, sluggish, regular decline in his well being, his mom says. Palliative care has made all of the distinction in how the household has coped with Jake’s devastating situation and in serving to Jake get pleasure from an excellent high quality of life. He acquired pediatric palliative care assist and providers till he turned 21.
Discovering palliative care
“When Jake was first identified, our doctor recommended enrolling him in palliative care. Like many households, my first thought was, ‘Oh no, he thinks my son is dying.’ I had no thought what palliative care actually was or what it might do for us,” Barbara recollects.
She lastly took his