Meet our September 2010 Stroke Hero Of The Month - Katy Powell

A note from Brendon’s Smile…

Typically, the parents of a Survivor, or in some cases the Survivor themselves submit a Hero’s story.  That story comes to us in whatever formats the mother, father or Survivor chooses.  The staff of Brendon’s Smile then attempts to transform that information into a fitting tribute for our Stroke Hero of the Month. 

This month, it somehow seems fitting to present the story of our September 2010 Stroke Hero of the Month in her mother’s own words, with no editorial additions or subtractions; left in a “first” person’s account. 

(As told by Anna Powell. Katy’s Mother)

Our daughter, Katy, was born after a very normal pregnancy.  During delivery, her umbilical cord twisted and pinched and she flat-lined twice.   She had a slight learning disability and developed a need for glasses at age 3.  She also had low muscle tone which caused her to lose her balance a lot.  She was always happy, always laughing and very independent.  She loved going to school, riding the school bus and playing birthday party with her dolls. 

At age six, she suffered a stroke while playing one morning in September 2000.  As I was at work, my husband and nine-year-old daughter took her to Central Texas Hospital in San Marcos where she was stabilized and transferred to Children’s Hospital of Austin for 10 days.  At this time she began to have seizures.  She recovered about 90% before suffering another stroke in December 2000 following a virus.  She was recovering from that one when she suffered a major stroke in February 2001. 

She was admitted to Children’s Hospital of Austin in the Pediatric Intensive Care Unit for 2 weeks having numerous tests and MRI’s run with no results.  After returning home she continued to deteriorate losing her ability to walk, talk, chew and swallow.  In May 2001, she was readmitted to the hospital for low blood pressure and lack of nutrition due to losing her ability to chew and swallow.  She spent two weeks in Pediatric Intensive Care Unit with more tests to determine the cause of her strokes.  While hospitalized she suffered another stroke.  She was ambulanced to Texas Children’s Hospital in Houston to see a specialist (the ambulance had a flat on the way).  The second night in Houston there was a huge flood and we were delayed for an extra week while machinery dried out.  We were there for two weeks in all.  I stayed at the hospital while my husband traveled back and forth to our home in Wimberley (southwest of Austin) from Houston to care for our older daughter and animals.  By this time Katy was on about 10 different medications 4 times a day and a special nutrition drink for weight gain.  In July 2001, she re-entered Children’s Hospital of Austin to have a gastrostomy tube placed in her stomach for more efficient feeding.  In August she suffered another stroke which we believe was her final one.  She had been tentatively diagnosed with Central Nervous System Vasculitis. 

In December 2001 we were told she had only a few weeks left to live and pneumonia would probably take her.  In May 2002 we moved to Round Rock (north of Austin) to be nearer to medical facilities.  She was able to attend school part-time in a special class.  In October 2002 she started more intensive physical therapy three times a week at a local rehabilitation center and acquired a much more therapeutic wheelchair.  In January 2004 she began a neuromuscular retraining program at St. David’s Hospital in Austin for 6 months.  In February 2004 we removed her from school as it was too stressful for her.  In March 2004 she had a swallow study and her swallowing had improved enough for pudding type consistency foods.  February 2005 she had an EEG that showed very little seizure activity.  In January 2006 she took the last of her anti-seizure medication and her seizure activity only improved. 

In June 2006 we moved to Shiloh, Georgia (north of Columbus).  She attended physical therapy at Roosevelt Warm Springs Institute for Rehabilitation in Warm Springs, Georgia for a year.  June 2008 we returned to Round Rock, TX.  She had regained some movement and a whole lot of attitude.  She kicked me if she needed attention, looked at books (I had to hold them) and TV, and pushed me away and made a face and turned her face if she didn’t like something.  She would put her feet down and scoot across the bed.  She never had pneumonia and only one cold.  And she had recently become very vocal.  She had 8 hospital stays, over 20 MRI’s (I have lost count), was almost never sick and she had defied the odds.  Even

during her illness, we were able to travel a lot with Katy.  We went to spring break at Cape Canaveral, Florida; Smoky Mountains; Las Vegas; Grand Canyon; southern Utah; Death Valley; Savannah, Georgia; Disney World thanks to Make-a-Wish. She was even an honorary junior bridesmaid in her brother’s wedding. 

In November 2009, Katy began to have problems with her g-button.  It leaked almost continuously.  She became uncomfortable and bloated and developed at urinary tract infection.  In January 2010, she was feeling listless and became dehydrated.  I gave her some Pedialyte and laid down with her and told her if she didn’t feel better in the morning, we would go to the hospital.   It was 2 AM.  At about 6 AM, I woke up and checked her and realized I didn’t hear anything.  I turned on the lamp and realized she was gone.  She had passed away peacefully in her sleep with me by her side.  I tried to revive her and the ambulance team tried and the hospital tried with no results.  The doctor at the hospital said her kidneys had failed.  She was 15 years old.  She was laid to rest next to her grandpa in Uhland, TX.

Anna Powell

Katy’s mom

There are no words that can express the true strength demonstrated by Katy Powell.  We will not attempt to condense that which makes Katy’s memory so heroic in the small space we have here and there by lessen it.

Each Hero is special in their own right.  The month of September however has special meaning to the board members of Brendon’s Smile, as it is Brendon’s birthday month.  September is also the month that the Annual Brendon's Smile...Raising Awareness for Childhood Stroke Rally/Walk occurs. 

We hope that the selection of Katy and giving her mother Anna the opportunity to tell Katy’s story demonstrates the true honor we take in naming her September 2010’s Stroke Hero of the Month.

This year at the request of Brendon himself, the 4th Annual Rally/Walk will be held in memory of Katy (and Lorin Prahm).