TOUCH IS THE SENSE OF LOVE
I’m scared,
 You hold me.
I cry,
 You hold me close.
I’m hurt,
 You hold me closer.
Touch is the sense of love.

It’s hard to imagine such a beautiful and beaming girl healthy one minute and hanging in the balance of life the next. Her struggle is laid out in a Web site her parents set up to follow her progress as she recovered from the severe reaction to medication. Photographs and poems written by Kaitlyn offer an insight into the battles she fought and the appreciation she had for those who stood by her:

FAITHFUL FATHER
Faithful father,
Tall, brave and strong.
Faithful father
To him I belong.
It was then he cried,
when I almost died.
Faithful father
My life I depend on you.

Kaitlyn’s family’s nightmare began April 5, 2002, when Kaitlyn began showing signs of the flu. She was treated at an urgent care center the next morning and by Sunday she had a severe rash and high fever. She was admitted to the hospital and her parents watched as their daughter’s health deteriorated.

The diagnosis – toxic epidermal necrolysis (TEN), a severe form of SJS, a rare but life threatening hypersensitivity disorder affecting skin and mucous membranes. The disorder affects all ages and genders, including the pediatric population. It is most often caused by a reaction to medications such as non-steroidal anti-inflammatory agents like ibuprofen and some antibiotics. Kaitlyn’s condition was caused by a common over-the-counter medication, Children’s Motrin.

Kaitlyn passed away on December 17, 2003, due to complications from SJS/TEN, but the Web site has helped those of us who have never met her understand just how extraordinary she was. With hope, maybe her story will prevent another precious child from suffering.

SOURCE: Stevens Johnson Syndrome › Young girl’s struggle with SJS laid out on Web site