Inspiration found at the age of 16

  • Published
  • By Airman Samantha S. DeVries
  • 366th Fighter Wing Public Affairs Office
MOUNTAIN HOME AIR FORCE BASE, Idaho --  Approximately 20,000 people in the United States suffer from it.

Almost 50 percent die at birth or shortly after because of it.

But Heidi Peck won't let "it" ruin her day -- or her life.

Diagnosed at birth with Autosomal Recessive Polycystic Kidney Disease, or ARPKD, Heidi has continued to fight back since the day she went into congestive heart failure at 6-months-old.

"When Heidi was a baby we were not given any hope that she would live beyond a toddler," said Heidi's mother, Debi Peck. "We know of other parents who were told not to even bother feeding their baby because it was going to die anyway."

Yet Heidi, with her long brown hair and brown eyes, does not have the appearance of a girl who has been fighting for her life. The 16-year-old teenager's slight frame is the only hint that something may not be quite right.

Her flute has become her constant companion and helps combat the ailment that continues to threaten her.

"Playing the flute has helped exercise her lungs," said her father, Chief Master Sgt. Norman Peck, 366th Mission Support Squadron superintendent. "Because ARPKD causes the kidneys, spleen and liver to enlarge, lung capacity can be reduced because of lack of room. Almost all babies who die at birth die because their lungs have not had room to develop, not because of kidney failure. Heidi's lung capacity continues to be above normal, due in part to her flute playing."

According to Heidi's parents, high blood pressure remains her most significant symptom, making medication necessary to control it. Vitamin supplements help her kidneys function normally while growth hormone shots taken when she was younger helped fight the affects of failure to thrive problems.

"Perhaps the most bothersome symptom is her body's inability to maintain fluids, which causes Heidi to have to drink constantly in order not to dehydrate," her parents said. "In addition, Heidi was diagnosed three years ago with Celiac Disease, and has to maintain a gluten-free diet, (which means) no wheat, rye, barley or oats. Doctor appointments and blood-work have become a way of life. Heidi handles all of this with maturity and grace that is well beyond her years. She never complains."

When the battles get tough, Heidi uses her flute to fight back.

ARPKD is a very rare disease inherited by children only when both mother and father carry a particular, abnormal gene. Even then, the chance of their child getting the disease is only 25 percent. Failure to thrive, high blood pressure and urinary tract infections are some problems the disease causes. While no cure exists, medicines control blood pressure, antibiotics treat infections and nutritious diets improve growth. Those who experience kidney failure must receive dialysis or a kidney transplant.

Despite all the medical problems Heidi faces, she still excels in her day-to-day life. Her parents credit music as her stabilizing force. By age 14, Heidi earned her first college credits from Sinclair Community College through the Val P. Hattemer Endowment award, which awards scholarships to high school students participating in the college's youth wind ensemble. Heidi also earned a $250 scholarship to Northwest Nazarene University for winning the 2007 Nazarene Northwest Region Main Event in the instrumental solo category.

While simultaneously battling her ailment, she was the first chair for the all-honors high school band at Boise State University and plays for the Treasure Valley Youth Symphony, which is affiliated with the Boise Philharmonic Symphony. At the end of the 2007 school year, Heidi's peers voted her the 10th grade instrumentalist of the year at Mountain Home High School.

According to Heidi, "finding enough hours in the day to accomplish all I want to accomplish" is her biggest challenge.

"Music is a significant part of my life," she said. "I plan to go to college to pursue my passion for music."

In the meantime, Heidi continues to share her love of music with others she knows in hopes they too can find positive outlets to help deal with their own challenges. Her friend Abby was born with a degenerative eye disease, which has caused near blindness.

"She loves to listen to Heidi play the flute," said Mrs. Peck. "Heidi has a very compassionate heart and she and Abby developed a close, mentoring-type relationship. Heidi made a 'tactile quilt' for Abby, making pictures from highly textured materials so Abby could feel the shapes. This last year, Abby, who is now 9, started playing the flute."

Heidi also inspired her parents to take action to find ways to help those battling the rare kidney disease affecting their daughter. The Peck family is now planning a benefit concert for October along with the ARPKD/CHF Alliance. All proceeds benefit the alliance to give them the needed money for research to someday find a cure.

"I decided to plan the concert because funds are so badly needed for research into this disease," her mother said. "The more that is known about the disease, the better it can be treated, and perhaps someday, cured."

Until then, Heidi Peck will continue to fight back with music.