Olivia in the Paper!

A couple of weeks (March 23, 2011) ago Olivia was in the Newnan Times Herald to tell her heart story and to help promote our recent Heart Friends Function Bowling for Beads! See below:

‘Bowling for Beads’: Saturday event raises funds for Beads of Courage

By NICHOLE GOLDEN

nichole@newnan.com

Olivia Harvey of Newnan is like many eight-year-old girls. She loves horseback riding, singing and dancing with friends, and is a fan of teen singer Justin Bieber.
Olivia, now a second grade student at The Heritage School, was diagnosed at birth with three congenital heart defects — coarctation of the aorta, pulmonary stenosis and mitral stenosis — all conditions that will impact her for life.
“It affects both sides of her heart,” said Olivia’s mother, Melissa Harvey.
Shortly after birth, a nurse noticed the baby was having difficulty breathing while nursing. “She went directly down to the NICU,” said Harvey.
At six months of age, Olivia began receiving care at the Children’s Healthcare of Atlanta (CHOA) Sibley Heart Center. In June 2003, she underwent a cardiac catherization to treat the coarctation, or narrowing, of her aorta and pulmonary stenosis, a condition in which a narrowed pulmonary value restricts blood flow to the lungs. Her heart did not respond to the procedure, and she remained in the Children's Michael P. Fisher Cardiac Intensive Care Unit (CICU) while waiting for open-heart surgery.
A week later, Olivia underwent a successful surgery to remove her pulmonary valve and repair the coarctation of her aorta. She remained in the hospital for two-weeks to recover. She continues to receive routine check-ups to monitor her mitral stenosis and evaluate the need for a pulmonary valve replacement surgery.
Melissa Harvey said that she feels fortunate to have had the expertise of CHOA so close to home. “It was very scary,” she said. “They were my support system.”
To support other families who undergoing similar experiences, Melissa co-chairs Heart Friends, a group composed primarily of families who have children treated at the Children's Sibley Heart Center.
On Saturday, March 26, Heart Friends will host the Bowling for Beads event to fund the cost of the Beads of Courage at Sibley. The beads program allows patients to share the story of their medical struggles and triumphs through colorful beads they receive along their medical journey.
For each procedure, lab test, or visit, the patients receive a hand-crafted glass bead to add to their chain of beads.
Harvey said Bowling for Beads, to be held at Ten Pin Alley at Atlantic Station in Atlanta, is in its second year. The event “completely” funds the Beads of Courage program at Sibley.
Saturday’s event will run from 1-4 p.m. In addition to an afternoon of bowling, children can visit with clowns, enjoy face painting, and making bead bracelets. Great food will also be available for attendees. For more information, to purchase a ticket, or to make a general donation, go to: http://www.choa.org/Support-Childrens/Events/Heart-Friends-Bowling-for-Beads.
Tickets are $15 for adults; $12 for children and $10 each for Sibley Heart Center patients.
Olivia has her own set of bright beads, detailing her courageous health battles. “She’s doing remarkably well,” said Melissa.

Beads of Courage

So I get asked alot what is Beads of Courage?

The Program is a nationwide resilience-based intervention designed to support and strengthen the protective resources in children coping with serious illness. Through the program children like my daughter tell their story using colorful beads as meaningful symbols of courage that commemorate milestones they have achieved along their unique treatment path.

Ongoing evaluation of the Beads of Courage program indicates that the program helps to decrease illness-related distress, increase the use of positive coping strategies, helps children find meaning in illness, and restore sense of self in children coping with serious illness. The program also provides something tangible the child can use to tell about their experience during cancer treatment and after.

Olivia began her journey in December of 2002. 24 hours after she was born a nurse noticed that she was having trouble nursing. She asked if she could take her to the nursery to just check her vitals and that she would bring her right back to us. Olivia never came back...She was immediately taken to the NICU where they began running all kinds of tests on her to see what was wrong. This is when we got the news that she was born with 3 Congenital Heart Defects affecting both sides of her heart. She had open heart surgery in June of 2003 at Children's Healthcare of Atlanta when she was 6 months old to repair her Pulmonary Valve and her Coarctation of the Aorta. She is doing remarkably well today but will have to have more surgery in the future.

As you can imagine behind every success story like Olivia, there is a kid. A real kid who never asked to be born with CHD. So many kids like her have no choice but to go through what is necessary to feel better, to be able to play, and sometimes just to live. Watching them go through painful procedures and to try to hold back the tears of having just one more poke or needle prick is hard.  They fight a battle that most of us will never see or ever have to endure. This is what the Beads of Courage program is here for. So that in some way, big or small, these kids can be recognized for the sheer bravery that comes with just being themselves. They receive a handmade bead for many of the procedures they have to endure- pokes, echoes, surgeries, admission in to the hospital, and so many other things. When heart patients complete treatment, they have this beautiful strand of beads that they can point to and without saying a word, it shows how brave they are. Every bead required Strength, Patience and Courage. That's what the Beads of Courage are all about.

As a mom who has experienced this program first hand, I can tell you that it has allowed my daughter to share with so many others about her journey. It has reminded her that she has Courage, Patience and enormous amount of Strength.

You can be a part of this wonderful program too, click here to make a donation today! Please join us on March 26th for our 2nd Annual Bowling for Beads Event!