Klamath Falls, OR

May 18th, 2013  from 10:00am  – 3pm!

 For more information contact Donna Chapman at 541-883-3699.
  Registration forms can be picked up at Lithia Ford on Washburn Way a
and
Chapman’s Farm Repair 822 Spring Street.

You can register for Madison’s 5k/Run/Walk  online at: http://www.rsracingsystems.com/Search/event.aspx?id=16871

Click here :MilesforMadisonEntryForm

Click here MilesforMadisonSponsorshipForm2013

Madison’s story:

My name is Madison and I am 10 years old and in the fifth grade.  I have two sisters.  I love to play soccer, basketball and the flute.  I have always been a healthy girl.  One day I started to feel yucky with a headache, cough and a fever.  My mom thought it was just the flu.  After several days, we noticed that I had a high fever and blisters in my mouth.  My parents took me to Urgent Care that evening and they said I had a sinus infection and something viral causing the blisters and rash that was on my elbows.

The next day when I woke up from a nap, my mom was very alarmed.  My lips and face were swollen, my eyes very red, and my rash was spreading.  She called our family doctor immediately.  Once the doctor took a good look at me, she said that my mom needed to take me straight to Akron Children’s Hospital.

Once we got to the hospital, many different doctors came and took a look at me.  They put a needle in my arm to give me fluids.  After running several medical tests, the infectious disease doctor told us that I had Stevens-Johnson Syndrome.  I also had pneumonia which triggered the Stevens-Johnson Syndrome.

I ended up spending a couple of days in the PICU.  It was there that they put me on oxygen and put a PICC line to give me my medicine.  I was a on a lot of medicine for my pain, pneumonia, and the infection in my eyes.  The doctors told me and my parents that Stevens-Johnson Syndrome is like having a second degree burn, but mine was mostly on the inside.  My immune system started to attack my own body.  It attacked my eyes, nose, mouth, lips, throat, lungs, and urinary tract system.  It was very painful.  I could not eat, so I had to have a feeding tube.  The burn unit even had to clean out the dead skin in my mouth and on my lips.

I was lucky, though, because my parents got me to the hospital early.  I only had to spend 13 days in the hospital, while others like me have to spend a lot more time there.

Once I got home, it still took me awhile to get better.  I had a hard time eating and I was tired a lot.  But I will get back to my old self, soon.

Tell the FDA we need a mandatory adverse drug reaction reporting system by medical professionals of all severe drug reactions including Stevens-Johnson Syndrome!

Jonah was diagnosed in February of this year and spent two weeks under intensive care followed by two weeks of recovery at Hahnemann University Hospital. Today, Jonah continues to struggle with the long term effects of the reaction including dry eye syndrome ,Permanent damage to soft palate and lips, Chronic Vitamin deficiency, Undiagnosed Arthritis symptoms, Chronic fatigue, Hyperpigmentation, Extreme sun sensitivity and Miliaria Crystallina.

“It took three trips to the emergency room and three hospitals before anyone could diagnose what was happening,” said Lake. “I want to spread awareness about Stevens Johnson Syndrome so that others who experience these types of reactions can get treatment faster.”

Stevens Johnson Syndrome (SJS) or Toxic Epidermal Necrolysis (TEN) are severe allergic drug reactions that are the result of nearly any medication, including over-the-counter products. SJS / TEN are characterized as including painful blistering of the skin with flu like symptoms. Most cases include severe ocular involvement resulting in vision loss, dry eye syndrome and photophobia. Left untreated, SJS and TEN can result in death.

“There was not a single day that went by without crying being in absolute agony, the worst pain you could ever describe,” said Lake when describing his reaction. “Once I was finally diagnosed I was told that my chances of survival were very small because early diagnosis is so critical to the treatment process.”

Free Throws for Hope will take place on August 23, during the annual Stevens Johnson Syndrome Awareness Month and funds raised throughout the event will be donated to the Stevens Johnson Syndrome Foundation (aka Julie Foundation for Severe Allergic Drug Reactions). Over 15 states have proclaimed August as Steven’s Johnson Syndrome Awareness Month, including Pennsylvania who issued a Unanimous Resolution naming August SJS Awarness Month.

“When my daughter was diagnosed with we were told that the likelihood of ever meeting another patient was rare,” said Jean McCawley, Founder of the Stevens Johnson Syndrome Foundation. “Today we have met thousands of patients and families around the world. Just because something is not tracked does not mean it is rare. We need to work together to educate our doctors and communities about the warning signs of adverse reactions so that more patients can receive treatment faster.”

The Stevens Johnson Syndrome Foundation is a non-profit organization that provides support services to SJS / TENs patients and their families while working to educate the medical community about adverse

allergic reactions. Founded in 1995 the SJS Foundation works with patients and doctors around the world.

“SJS took the life of legendary basketball player Manute Bol in June 2010 and was sadly the first time many people had ever heard of the life altering reaction,” said McCawley. “We are very grateful that Jonah has offered to share his passion for basketball in honor of those who have both lost loved ones or are struggling with the lasting effects of an adverse reaction.”

Free Throws for Hope will be held at The Gap Family Center. The first free throw will be shot at 5 p.m. and the event will continue throughout the next 24-hour hours. Those interested attending or supporting the event may contact Jonah Lake at FreeThrowsForHope@live.com or (717)490-1204.