A Father’s Reflection

The Christmas of her senior year, my oldest daughter Ashley was diagnosed with a rare, life-threatening illness called Guillain-Barre Syndrome. Her mother and I learned quickly how difficult a child's serious illness can be – and how vital it is for parents to stay by their child's side both during and after hospitalization.

On Christmas morning Ashley experienced difficulty in walking and pervasive muscle pain. In less than a week, she was on a respirator in Intensive Care, 99% paralyzed, able only to blink and move the tips of her fingers and toes. Every muscle was in excruciating pain.

Over 31 days she endured more than 200 injections and 50 various procedures such as having a tube threaded into her wrist vein and slowly, painfully worked up to her chest. Blood was removed from her body five times, its plasma separated and filtered to remove harmful antibodies.

Her heart rate more than doubled to around 150 beats per minute. The slightest exertion would kick it up to 170 or 180. If it had hit 200, her heart would have stopped.

Since Ashley could not swallow, saliva had to be continually suctioned from her mouth. Every hour, she endured the painful deep suctioning of her lungs. One lung collapsed during her stay. Other complications included anemia, bleeding, blurred vision, vomiting, itchy rashes, sleeplessness, life-threatening low calcium levels and a bladder infection. Her skin became grey and brittle. Her lips cracked. She lost 25 pounds.

This was all so disturbing and overwhelming, you might think we would just surrender control to the hospital. But something kept us by Ashley's side, and we're forever grateful we were there. One frightening night we almost lost her. Her respirator failed. The ICU nurse had left her post and could not hear the alarms. Ashley was without air for one and a half minutes. Fortunately, her mother was there to get help.

We remained by Ashley's side as physical and occupational therapy were administered two or three hours a day. To prevent pneumonia, Ashley was rotated in bed 12 times daily and her lungs were x-rayed often.

We massaged her muscles continually to prevent atrophy, and helped her communicate by reciting the alphabet until she tapped a finger in response to a chosen letter. One especially bad day, she tapped out the question, “Am I going to pull through?”

As she slowly began to improve, therapists helped Ashley relearn how to talk, swallow, use her hands, walk and perform all of the tasks most of us take for granted. Although she lost some battles along the way, she won the most important one: She survived.

Similar stories are told in every state in America. These children are as brave and determined as Ashley. Despite their pain and suffering, they have it in them to rise to their challenges.

We now know how to help them. And, with your help, we will.