Drew is a 17 year old high school student living in West Jordan, UT. Drew is a soon to be Eagle Scout. He is in the Madrigals Choir and Drama Club at school. Drew has worked at the local rec center for several years, is a good athlete, enjoys sports and is comittted to his faith and family.
Drews father, Jeff has kept a blog as a way to update family and friends and also a way to express his experience he is going through as a form of theraputic release. You can read and follow the blog and Drews experience here
It all started with a fever
Drew has been diagnosed with a very rare condition (1 in 1 Million) with up to a 30% mortality rate. The "FIRES" Syndrome (Febrile infection-related epilepsy syndrome) is a rare epilepsy syndrome of unclear etiology in which children, usually of school age, suddenly develop very frequent seizures (up to hundreds per day) within two weeks after a mild febrile illness. The seizures are very difficult to treat with conventional anti-seizure medications and often require deep sedation with anesthetics. It is possible that the syndrome is caused by an inflammatory or autoimmune mechanism but this remains to be confirmed. Immune treatment and the ketogenic diet may help. Outcome is poor with most children left with significant cognitive disability and refractory epilepsy.
Fortunately Drew is admitted to one of the best Hospitals- Primary Childrens in Salt Lake City, UT and has some great ICU doctors and nurses, as well as specialists including Neorologists, Neprhologists (kidney specialists), Oncologists (cancer), and Rheumatologists (they help to manage children with autoimmune disorders) attending to him.
Drew has lots of support from his family, friends, high school friends/teachers/staff, ward members (church congregation), youth leaders, and neighbors.
Drews parents spend nearly 24/7 at the hospital at Drews bedside. As you can imagine, the mounting medical costs can be stressful and pose a huge distraction on what is most important, taking care of Drew.
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An exerpt from the blog- tender and emotional thoughts...
"The possibility that we might lose Drew seems to be creeping ever closer. We talk about Drew fondly and what losing him would mean to our family, and with that uncertain future facing us, we feel hopeless and somewhat despondent. As we talk about the Savior, and temple blessings, and placing our trust in the Lord, we start to feel a sense of reassurance that all will be well in the end. We remind ourselves that Drew is still here with us and we resolve to act as such. Despite some of the grim news from some of the doctors, and their reports of poor outcomes and likely having to let “nature take its course,” we decide we need to focus on the positive side of the statistics and try to stay upbeat and encouraged, especially as we visit with Drew in his room. At the end of the afternoon, we emerge from the chapel feeling a sense of peace and a resolution to keep fighting alongside Drew to overcome this tribulation."
- Taelyn Stinson
- K H
- Jack and Anne Lyon
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