Monthly Archives: December 2012

2012 Gratitude Report

2012 Gratitude Report

EDUCATION:

school nurseEvery year for the past 38 Years the National Reye’s Syndrome Foundation has provided life-saving Reye’s Syndrome information to the families of students in more than 136,000 schools across the United States and its Territories.

School Nurses and Administrators send a Reye’s Syndrome  packet of information home with each student at the beginning of every school year.  This packet includes Reye’s Syndrome Symptoms literature, bookmarks with NRSF contact information, wallet size ‘ingredients to avoid’ cards for Over-The-Counter children’s medications, a Reye’s Syndrome brochure, and a list of medicines that contain aspirin.

We know that this huge, educational initiative saves the lives of children all across the U.S. and we thank all school administrators and nurses for promoting Reye’s Syndrome Awareness!

VOLUNTEERS:

With the guidance of volunteer leaders from across the United States on our Board,  our RS survivors, and our caring community volunteers, the National Reye’s Syndrome Foundation  has stayed on mission for 38 years, educating and promoting awareness and saving lives.

We truly cherish your investment of time and money, and we count on your trust in our mission to eradicate the incidence of Reye’s Syndrome. The work we do at the NRSF is built on a solid foundation of financial accountability, transparency, and ethics.

And there is one more critically important element to our continued success. You. You are here to show us that there is a community of people who keep the mission of the National Reye’s Syndrome Foundation in their hearts each and every day.

bodNRSF’s All Volunteer Board of Directors

ACCOMPLISHMENTS:

A major milestone was achieved this year when talks between the NRSF, the FDA, and Bayer Consumer Health Care resulted in all aspirin manufacturers removing the words “baby aspirin” from all packaging and marketing.  For 37 years we fought for this life saving agreement and it finally came to fruition.  We know that this change will save many lives and we thank the FDA and the aspirin manufacturers for recognizing and acting upon this most serious issue.

This year, we have developed more technology to support our Awareness efforts; Android Apps, and E-books, promoting Reye’s Syndrome Awareness.  Our new apps; Aspirin Sense and Sensitivity, and A Guide to Chickenpox are both available in the google play store.

Our Reye’s Syndrome website is used by more than 150,000 people across the globe each month.  Visits always increase at the beginning of the school year, and during flu season. We are proud, and pleased to provide this quality information.

With the help of Transfer Me To DVD, located at www.TransferMeToDvd.com, all films and videos spanning our 38 year history have now been transferred to DVD for additional preservation.  We Thank them for donating so much of the work and supplies!

WITH YOUR SUPPORT:babyheart_right

  • 6,500 Emails answered this year.
  • 6,200 Phone Calls answered this year.
  • 136,000 Families Educated this year.
  • 1500 Reye’s Syndrome School Projects this year.

Several Major Dreams Came True this year:

  • Bayer removed all ‘baby’ aspirin packaging
  • NRSF goes to the SAG Awards
  • Millions of Young Lives Saved!

We invite you to join us in our work.  We invite you to donate toward our Awareness and Education programs.  We invite you to join the NRSF as a Member.

Thank You!

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Fall 2012

Fall 2012 Message From The NRSF President

johnWe have spent a lot of time this year, as always, on Reye’s Syndrome Awareness projects. We had several Reye’s cases reported, both here in the United States and from other countries. Several cases, are several too many! All we can do is continue to spread awareness and work hard at educating as many people as we can in an effort to save lives.

Spreading awareness and educating new parents, caregivers, and medical professionals not only requires a lot of time, it also requires support.

Issues that are rising include:

  • Parents are not immunizing their children, and this can potentially
    create an epidemic of viral infections like measles, chickenpox,
    and whooping cough returning to plague our youngsters. Viral
    infections that were once almost wiped out are coming back
    around because new parents and caregivers are confused about
    immunizations.
  • H1N1 flu, and new mutating flu strains, are evolving and circling
    the globe. We are not immune, and neither are our children.
    Bird Flu found its way to the North American Continent this
    summer, and Mexico killed millions of chickens and other fowl to
    attempt to contain the virus. The question lingers, did they
    contain the virus?
  • The Internet, with all its wonderful data, also perpetuates a host
    of incorrect information and a lot of it is about Aspirin and
    Aspirin use! There are facial mask recipes made of crushed
    aspirin tablets for teen-agers, and even people who challenge the
    existence of Reye’s Syndrome!
  • Chickenpox Parties! Of all the things to subject a child to, one
    who has no choice in the matter—another child’s germs and
    body fluids! This one should make us all ill just thinking about it!

In all instances, the possibility of Reye’s Syndrome lurks in the background and many parents and caregivers still don’t know about this deadly monster.

So we educate, we provide awareness, and we attempt to reach as many as we possibly can. We hope you are doing the same thing. Our message, your message, can save a little one’s life! Speak Up, and Speak Out—Remind parents about Reye’s Syndrome!

We also congratulate NRSF spokesperson Dick Van Dyke on his Screen Actors Guild selection to receive the coveted dickvandyke1Life Achievement Award. Dick will accept the award January 27 during the SAG Awards. His work with the NRSF and for Reye’s Syndrome will be highlighted during the presentation.

We also thank you, and hope you will continue to support the work that we do. We need your voice, and we need your membership. It all counts, and it all makes a huge difference!

Thank You for Caring.

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Spring 2012

Spring 2012: Message From The NRSF President

johnAlready, this year is shaping up to be a busy year as we extend our Reye’s Syndrome education and awareness outreach.

This year, we are asking families to come together in support of Reye’s Syndrome awareness.  We are asking the older generations to impart their knowledge to the younger generations, and we invite those younger generations to become active in supporting Reye’s Syndrome education and awareness.  Until we find a cure for Reye’s Syndrome, we must continue putting the message out; Kids and aspirin products don’t mix!  We must hand Reye’s Syndrome awareness down from generation to generation until we find a cure!

The uniqueness of the National Reye’s Syndrome Foundation is that all involved  are family.  My wife, Terri, and I have met most of you, and your families, at annual meetings, at hospital bedsides, at chapter gatherings, and at various fund raising events over the years.  The Foundation itself is one big family, with one single goal in mind; the eradication of a monstrous disease!  We don’t have hundreds of thousands of members, or donors.  We know each of you by name, and the name of your loved one attacked by Reye’s Syndrome.  You are not a stranger, you are family.

In today’s electronic world, it is easier than ever to stay in touch, and it is easier than ever to create support for Reye’s Syndrome education and awareness.

How simple it is to ask your boss if every  Friday, or every third Friday of the month be designated a Reye’s Syndrome Awareness Friday, and perhaps a ‘dress down day’, or potluck can be held with proceeds donated to the NRSF in support of educational programs.  Or maybe one sports game at school each year can be dedicated to Reye’s Syndrome Awareness and ticket proceeds  donated to the NRSF for educational programs.  And, for all those who have ‘friends’ on Facebook and other social media sites, creating a Birthday Wish Cause, or Memorial, with the NRSF as recipient of the gift, is a wonderful and so easy way to support Reye’s Syndrome Awareness.  It also helps the NRSF family grow stronger in outreach programs.

We are in this together, you and I.  We are partners in a common cause.   baby1

We are guardians of children past, present and future, and we shall not let them down.

Join the NRSF family in this most important cause.

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Bayer Drops ‘Baby Aspirin’

Bryan, Ohio, July 5, 2011 – by the National Reye’s Syndrome Foundation

Bayer Drops “Baby” Aspirin   coverkids

Today, in a phone call from the FDA, the National Reye’s Syndrome Foundation learned that Bayer Consumer Health Care has agreed to remove the word ‘baby’ from all of its aspirin packaging and marketing materials. The 81mg aspirin product will now be known as Bayer 81mg Low Dose Aspirin.

The National Reye’s Syndrome Foundation (NRSF) had met with the FDA on April 28, 2011 in Silver Springs Maryland, to voice its concerns about consumer misunderstanding of the use of the product, given the front panel stated ‘low dose “baby” aspirin. Although Bayer Consumer Health Care maintains that their use of the word “baby” was meant to describe the product “as a smaller version of their adult 325mg aspirin” product, the National Reye’s Syndrome Foundation found that consumers, especially new parents, were thinking the product was safe for children and infants. “We were receiving calls just about every day from panicked parents who thought they had just killed their child because they had not read the warning label on the back of the package. They only read the front label where it showed the word ‘baby’ and assumed it was safe to give their child”, states Terri Freudenberger, Co-Founder of the Foundation. “We had to do something to clarify the use of this medication to the consumer so we took our concerns to the FDA.”

In 1984 the FDA mandated that all aspirin products display a Reye’s Syndrome Warning label on the back panel of the product after it was discovered by a team of CDC epidemiologists lead by Dr. Karen Starko, that aspirin (salicylate) could trigger Reye’s Syndrome. Dr. Starko participated with the NRSF in the meeting with the FDA in April and had this to say about Bayer’s decision, “This is an important step in aligning marketing and packaging information with proper use. Kudos to the National Reye’s Syndrome Foundation for spearheading the conversation in this issue on behalf of children, and to the FDA for a prompt response.”

Marianne Piemonte, Aspirin Committee Chairperson at the National Reye’s Syndrome Foundation states, “We really have to acknowledge Bayer Consumer Health Care for their commitment to the health and well-being of children, and for their desire to properly educate consumers. The term “baby” aspirin is a misnomer. Forty years after the death of our sweet little girl I can now celebrate her short life, confident that no other parent will ever again innocently give their baby or toddler aspirin believing, erroneously, that it is safe medicine.

Former Maryland Attorney General, Joe Curran, who assisted in setting up the meeting between the NRSF and the FDA stated, “Thanks to Bayer for the agreement to remove “Baby” from bottles and marketing material, and a very special thanks to the leadership of John Freudenberger for the Reye’s Syndrome Foundation programs that have made parents aware of this disease, and of course, a heartfelt thanks to the FDA for listening to our concerns.”

John Freudenberger, President of the National Reye’s Syndrome Foundation, states, “Bayer Consumer Health Care’s decision supports the Foundation’s 37 year mission to eradicate the incidence of Reye’s Syndrome in children, and allows us to get closer to achieving that goal. We thank them for doing the right thing on behalf of children everywhere.”

When Reye’s Syndrome develops, it typically occurs when a person is beginning to recover from a viral illness like flu or chicken pox. It is a disease that affects all organs of the body; most lethally the liver and the brain, and mostly in children. Epidemiological research has shown a connection between Reye’s Syndrome and aspirin (salicylate). More can be learned about Reye’s Syndrome at www.ReyesSyndrome.Org.

For more information about this release, please contact;
National Reye’s Syndrome Foundation
800-233-7393

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Filed under 2012 In The News, Bayer Drops "Baby Aspirin", Foundation News

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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Spread The Word

Why Join Our Efforts to Eradicate Reye’s Syndrome?

child_reyes

Child in ICU with Reye’s Syndrome

Because NO child should have to suffer this!

There is no cure for Reye’s Syndrome, and all we know is that salicylates (aspirin) products can trigger this devastating disease.

Each year the NRSF reaches out to parents, caregivers, and medical professionals with Reye’s Syndrome Education and Awareness materials:

136,000 Annual School Mailing: each year the NRSF mails out a notice to more than 136,000 schools across the United States, reminding School Nurses and Personnel to download our School Package for parents and caregivers.

Baby Fairs and Health Fairs: Every year the NRSF supports Baby Fairs and Health Fairs across the United States with Reye’s Syndrome information.

Bi-Annual Newsletter: Twice a year, our ‘In The News’ comes out with Reye’s Syndrome information and updates, once in the Spring and once in the Fall. This publication has been available to members and donors for more than 38 years. This year, we will offer a monthly news update via email to those who subscribe on our website at http://www.ReyesSyndrome.Org

Student Projects: Whether student nurses, or doctors, or junior and senior high students, we support their projects and provide Reye’s Syndrome literature and videos free for the asking.

Reye’s Syndrome Awareness Month: September is always Reye’s Syndrome Awareness month – just in time for kids to go back to school! Working with our School Nurses, we work hard to get the word out: Kids and Aspirin Products DON’T Mix!

RS Awareness Magnet
RS Awareness Magnet

 

 

Membership Drive: Our annual membership drive co-incides with Reye’s Syndrome Awareness month, and anyone who joins the Foundation as a member receives a free Reye’s Syndrome Awareness ribbon magnet. (Magnets were donated to the Foundation to support awareness.)

You can also purchase a Kids and Aspirin Don’t Mix! ribbon to help us spread the word

Other ways you can help educate and spread the word:

  • Like us, and Add one of the pages here to your Facebook page so all of your friends can be reminded.
  • Pin one of our pages to Pinterest, and any other social network where you are a member, so word spreads.
  • Add the NRSF GoodSearch, GoodShop toolbar so that the Foundation raises money while you do what comes naturally while on the Net. (Shopping and Searching – find out more by clicking the link.)
  • Sell on Ebay and Designate the NRSF as Your Charity of Choice, Donating a Percentage of Sales through MissionFish to the NRSF. For more information, our eBay home page is located here: NRSF Ebay MissionFish Home Page
  • Sign up for monthly news alerts about flu, ebooks, apps, research, reminders, and meetups at the website at www.ReyesSyndrome.Org.
  • Send us your used Cell Phones and we will recycle them; phones will go to Troops, and battered women’s shelters. Send them to the address at the top of this blog.
  • Become a Member: join at our website.
  • Or Donate at the website. (links will open a new window)

All donations are tax deductible, and you will receive a letter and receipt from the Foundation in acknowledgement of your support.

We thank you from the bottom of our hearts for helping us spread the word: Kids and Aspirin DON’T Mix!

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December 30, 2012 · 4:01 pm

Julie’s Story

Julie In The Palm of Her Hand – written by Julie’s Mother
Julie Therese… a vibrant child who charmed everyone she met and dearly loved by her parents and two younger sisters…Karen, 8, and Meghan, 3.  She seemed able to strike up a conversation with the oldest adult…and play on the level of the smallest child.

I was Julie’s Girl Scout leader before Christmas in 1979 when our troop decorated a tree and sang carols for the residents at a local nursing home.

One of the residents told Julie it would be her first Christmas ever without her family.

And so, on that busy Christmas morning in the midst of toys, gifts and wrappings, it came as no surprise to me when she asked to bring flowers to her “new friend” at the nursing home…a gift for a special lady on Christmas Day from a very special nine year old girl.

It would be our last Christmas ever with Julie.

The winter of 1980 was uneventful for our family.  I was oblivious to the fact that Reye’s Syndrome was devastating the lives of children and families all over the country. There were 548 cases of Reyes reported to the Center for Disease Control that year (113 in Ohio) with at least 107 deaths.  Five deaths were reported in Ohio… But not in the news!

July of 1980 came and Julie spent her usual week at Girl Scout Camp. While she was away, several children in town became ill with what appeared to be “just cold” symptoms…sore throats, low-grade fever.  The swim meet scheduled for Karen was cancelled since so many swimmers were down with “whatever was going around”. And then Meghan developed a sore throat and fever.  Aspirin, one and ¼ grain (80 mg.) per year of age every four hours for fever over 101 degrees was the standard in 1980.

I gave Meghan two, chewable, orange flavored, Bayer Baby Aspirin.  She recovered within 24 hours and Julie came home from camp. The following week Karen developed a fever of 102 degrees that remained elevated for a few days.  On her birthday, July 25th, suspecting that it might be strep throat, I took her to our pediatrician for a throat culture which proved to be negative. “Just a simple viral infection”, I was told by the nurse on the phone.  “Continue the aspirin and fluids and call if she is not better by Monday”.  Karen, thankfully, recovered.

Years later I learned that it was July of 1980 when studies done in Arizona, Ohio and Michigan suggested a connection between the use of aspirin with the initial infection (flu, chicken pox) and the development of Reye’s Syndrome.        

 Julie was so active over the weekend catching up on her summer reading and swimming with her friends at the pool… I gave little thought to the fact that perhaps she would also catch this mysterious summer virus.  But on Monday morning, July 28th, as we headed out for swim team practice, Julie asked me to drop her off at the library.  “I don’t feel good and if I’m going to be sick, I want plenty of books to read.”  Even now I am sickened by the thought of what happened next.  I can see her standing in the kitchen while I placed one adult aspirin (325mg) and two “baby” aspirin in the palm of her hand.

Was it all a dream?  No, it was a mother’s worse nightmare.   I gave her a substance  which would be toxic for her.  It was the first day of the last week of my beautiful daughter’s life.

By Wednesday morning Julie had recovered and my thoughts turned to preparing for house guests scheduled to arrive late Thursday.  Julie was very excited since she had not seen her friend Leah, since she had moved to Michigan.  But something still wasn’t quite right with Julie. We went to MacDonald’s Wednesday evening and she said she didn’t feel like eating.  No nausea or stomach pain; just no appetite.  

No appetite for MacDonald’s?  Surprised and feeling somewhat anxious, I brought her home and she went to bed before the sun went down.

Julie’s malaise continued through Thursday but she was up to greet Leah when the family arrived Thursday night.  They trotted off together to the girl’s bedroom where we could hear the sounds of their chatter and laughter drifting through the house

Thank God…she seems to be OK.  You are definitely a nervous Mom.  Just calm down.

 Friday, August 1st.   The girls were up bright and early making plans for the day.  Julie, at last, ate a good breakfast of French toast; her favorite.  I took the other children to the pool while Leah’s mom took Julie and Leah to the mall for haircuts…much to their delight!

Life had returned to normal… the weather was hot but it didn’t matter… I knew it was going to be a great weekend.      

It was noon and I was in the driveway unloading wet suits, towels and pool toys when Leah came running out of the house. “Julie threw up in the beauty shop!” she yelled.

I found Julie in her room reading in bed.  “Are you OK?  What happened?” I asked.  She explained that she “just threw up” on the floor. She didn’t know she was about to be sick and couldn’t make it to the restroom. Her tummy felt soft to touch.  She did not complain of pain or cramping.  No headache, but very thirsty.  I brought her ice chips… and waited, almost prayerfully, for the diarrhea to begin.

Later, Leah’s mother said that Julie had vomited “suddenly and forcefully” at the mall.  It continued that way for the next six hours, frequently and relentlessly, until the vomiting was reduced to nothing but dry heaves.  At 8:00 P.M. I called our pediatrician at his home.  He said it was most likely a severe gastroenteritis and warned that it would probably “go through the whole family”.  And our house guests, too, I thought!  “If she continues to vomit, bring her to the office in the morning”.

In retrospect, I wish he didn’t have Saturday morning office hours.  If only we had just brought her directly to the emergency room.  The first of a long list of “if only’s” had begun.

 It was a long night.  Julie climbed into bed with me.  But she was restless and occasionally tip-toed to the kitchen for more ice.  The vomiting appeared to have ended.  At about 5:00 A.M., Saturday, she asked to go out to the couch in the family room.  I followed and noticed that she seemed to stagger a little as she walked down the hallway.

Across the room, through the glass sliding doors, I watched a beautiful sunrise.  When I called her attention to it, she looked at me groggily and in an irritable voice said, “I don’t want to look at the sunrise.”  And then, “Mom, I want Leah to leave…”

Dear God…Something is terribly wrong with Julie, I prayed.  This is not happening!   

A few minutes after 6:00 A.M., I told Julie’s Dad “I’m worried.  I’m taking her to see Dr. C. at nine o’clock.”   Bill, always the optimist, reassured us that Julie would be just fine.

Of course, she’s going to be fine.  She was sick to her stomach…probably something she ate.  Dr. C. will wonder why you ever brought her in

Julie was quiet on the way to see the doctor.  She didn’t even want to bring along her book that she was reading from the Boxcar Children series. But she begged me for water.  Certain now that the vomiting was over, I gave her a full glass.  “Much better”, she smiled.

When we arrived at the doctor’s office, she threw up in the parking lot.  Clear liquid.  With difficulty, she walked into the doctor’s office.

For the first time, Reye’s Syndrome flashed through my mind.  But I quickly put that one to rest.  No…it’s summer. This cannot be the flu.  And she had chicken pox in 1978…during the blizzard.

“Hello, Julie!  Give me five!” Doctor C. said when he saw her.  Julie responded with her good-natured high five.  She knew that he would make her better.  She loved Dr. C. and he had always made her feel better…usually within hours.  He quickly began to examine her…no fever, abdomen soft and non-tender, neuro exam unremarkable.  He looked at me and quietly stated “I know what you’re thinking, Mom.  It is not Reye’s Syndrome!” 

He couldn’t know what I was thinking…but now I knew what he was thinking.  At the time, however, I did not know that a blood test for ammonia levels and liver function was available to help with a diagnosis.  But he did.  Strange, I thought…. he told me to call him at 6:00 P.M…one way or the other.

 He sent us home with a prescription for a Tigan suppository…an antiemetic that would help her stop vomiting.  The pharmacist seemed reluctant to give it to a child and called the doctor’s office to confirm his choice of medication.

At 12 noon, after a struggle to help Julie, now stumbling and holding onto the walls, I got her back to bed and gave her the suppository.

Again, I learned a few weeks later that the FDA had issued a warning that anti-nausea drugs such as Tigan should be avoided with vomiting in children since it may mask the symptoms of Reye’s Syndrome or increase it’s severity.

By two o’clock on Saturday afternoon, Julie’s condition was rapidly deteriorating.  She became extremely restless, confused and disoriented.  When she complained of “black spots in front of her eyes”, I ran to the telephone and called the doctor.  He said he would meet me at Children’s Medical Center.

How could I get there?  Could Leah’s mother stay with the children?  Could I get Julie there alone?  What if she dies on the way?

I struggled to get her out of bed and on her feet.  She was so lethargic and didn’t want to get up.  Somehow, I got her into the hallway.  I looked up and there was her Dad coming toward us.  He picked her up and put her into the back seat of the car.  As we pulled away I glanced back at the house.  Karen and Meghan were standing and waving on the front porch.

It was the last time they ever saw their big sister alive.

On that hot Saturday afternoon, confusion reigned at the Children’s Medical Center.  There had been a rash of admissions to the emergency room and it was more than two hours before Dr. C. was advised that his patient was there.

During that time Julie became more incoherent and couldn’t even tell me her name.  A young resident shocked me when he asked if she might have somehow obtained “drugs”.  Julie was thrashing about in the bed and was so uncooperative that the nurse had to restrain her to draw blood and start an IV infusion.  Her behavior was so uncharacteristic of the little girl we knew and loved.  At one point she even bit my hand.

I remember that suddenly Dr. C. appeared at the foot of her bed.  He said nothing, turned away and left the room.

It was no more than ten minutes before Dr. C. returned accompanied by another doctor dressed in casual clothes.  He introduced us to Dr. Steve, a specialist in gastroenterology, who recently came from Emory University Hospital in Atlanta.

He quickly examined Julie and asked if I had given her aspirin.  Confused by the question I answered, “Not since last Monday…for her sore throat and fever”.  He then said that he had the results of the blood work and she had Reye’s Syndrome.

I backed away…so stunned by those words he might as well have hit me with a baseball bat. The illness I knew killed a number of children in Michigan two years ago.  The illness that is so rare I believed it could never happen to one of my children.    Aspirin?  ASPIRIN?  What did aspirin have to do with it?  Terrified, I watched as they rushed her to ICU.

Time stood still.  It was an eternity before Dr. Steve came out to the waiting room.  He was cautiously optimistic and explained that she was in Stage II… but was not in coma.

She was receiving mannitol, a drug to reduce the swelling in her brain and carefully regulated IV fluids to keep her hydrated.  At present he did not feel it necessary to insert an intracranial pressure monitor.

The nurse told us that we could not stay with her as she might become more agitated.  We could visit for ten minutes on the hour, every hour.

But she must be frightened.  I wanted to see her, comfort her, love her.  How could I possibly “agitate” her?

 We waited…each interminable hour.

At five o’clock on Sunday morning, August 3rd, my restless sleep was disturbed by a clap of thunder.  I hurried to the intercom and asked to see Julie.

When I entered the unit I was devastated by what I saw and heard…a rasping sound from her throat…large, fixed and dilated pupils…decerebrate rigidity.    The nurse was across the room.  I called to her for help.

On Monday, August 4, at 6:00 P.M., one week after the onset of a mild viral infection, Julie was removed from life support.

In the twenty minutes that her heart remained beating, I placed my hand in the palm of her hand.  I told her that when I let go, her grandmother would be there to show her the way to God.

And He would forever hold her in the palm of His hand.

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