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Joshua’s Story

joshuaMy son, Joshua, a sophomore at Hampshire College in Amherst, Massachusetts died from the complications of Reye’s Syndrome in 1994… he was 19 years old.  At the time his illness began, he was a healthy six-foot college sophomore, happy with his life and the college of his dreams.  He was growing into a wonderful young man and excelled in his course studies at the college he loved.

He called me one snowy day to say he was not feeling well. He asked me what he should do. I advised him to go to Student Health and call me right after his appointment. The doctor said he had the flu. Based on the symptoms he described, I told him he should come home and we would see our family doctor. It seemed to me he had Mono. He came home and saw our family doctor who confirmed that he did indeed have Mono.

The treatment was simple…get plenty of rest and drink lots of liquids. The problem was that as the days progressed, he continued to get sicker. We went back to see the doctor every day for several days. Then he was admitted to the hospital, discharged and admitted again. Still he was no better.

He was admitted once again and this time he was critical. Our doctor either thought there was nothing to worry about or he didn’t know what he was dealing with. Josh had test after test and still there were no answers.

Finally, Joshua was transferred to another hospital… the last time Joshua spoke was in the ambulance. When we arrived at the hospital we were met by a team of doctors and while taking him to intensive care they requested a signed consent form for a liver transplant. Every possible test was done, and finally the diagnosis of Reye’s Syndrome was made.

Doctors put Joshua into a drug induced coma, and on life support. He continued to get worse and on March 4th, he suffered brain death. On March 5th we disconnected life support and he stopped breathing immediately. His death occurred 2 weeks after he was diagnosed with the flu and one week after being admitted to the medical center.

Joshua’s Mom states;

“I strongly believe education is the best prevention. I know I was aware of not giving aspirin to children with viral infection, but I didn’t consider the over the counter medications we all take may contain aspirin.

“Since Joshua’s death, the hospital has instituted a protocol for Reye’s Syndrome because they did not know what they were dealing with in Joshua’s illness.

“There were a combination of issues that played a role in Joshua’s death from Reye’s Syndrome. Our trusted doctor did not take Joshua’s illness seriously, and the other doctors who treated Joshua ran tests but didn’t know what they were dealing with.  When Joshua was admitted to the hospital for the last time our physician went to a medical convention out of state. He called me when he returned to ask about my son. It was too late, Joshua had died.

“It is my strongest belief that parents, doctors and hospitals need to be educated about Reye’s Syndrome. I am finally able to write about this 13 years after his death and would like to offer my assistance in helping to accomplish this important goal.”

Let Joshua’s Story be a learning experience, one that keeps our young people alive and safe from the threat of Reye’s Syndrome. So tell them Why…. tell them about Aspirin and about the products that contain aspirin (salicylates). Teach them to read the labels.

Tell them about Reye’s…. they can pass the word to their friends who offer them an aspirin, alka-seltzer, or pamprin, pepto-bismol or muscle creams that contain salicylates.

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eBooks and Apps!

eBooks and Apps

To assist families, caregivers, and medical professionals, the NRSF has created several books and android apps:

  • Aspirin Sense and Sensitivity is an android app found in the google play store.  This app details everything one would want to know about aspirin; what drugs aspirin interferes with, who should and should not take aspirin, lists of products that do and do not contain salicylates (aspirin), and a handy list of ‘other’ ingredient names aspirin is known as.  This is a great app to have on hand when shopping for children’s medications, or for your own needs.
  • A Guide To Chickenpox is an app that assists parents and caregivers in managing children and chickenpox.  This app includes a detailed look at vaccinations, and also provides tools for parents for tracking the needs of their children.
  • Because You Need To Know is an eBook available in all eBook Stores on line, including Apple, Amazon, and Barnes and Nobles that teaches about Reye’s Syndrome.  This ebook can be downloaded in any format from the Smashwords ebook store, to be read on a computer or any ereader device.
  • Coping With Family Stress After Reye’s Syndrome is an eBook available in all eBook Stores on line, including Apple, Amazon, and Barnes and Nobles that helps families touched by the trauma of Reye’s Syndrome.  This ebook can be downloaded in any format from the Smashwords ebook store, to be read on a computer or any ereader device.
  • Coping With Family Stress After Chronic Illness or Death is an eBook available in all eBook Stores on line, including Apple, Amazon, and Barnes and Nobles that assists families through their grief.  This ebook can be downloaded in any format from the Smashwords ebook store, to be read on a computer or any ereader device.

We will keep you updated here as more ebooks and apps become available.

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