Date:      Saturday, May 15, 2010
Time:     2:00-5:00 PM
Place:    North Canyon Park
                3900 South Bountiful Boulvard, Bountiful, Utah

To receive an E-vite or for questions, please email Aimee Hardy, IHH Family Picnic Chair at sbaimee@yahoo.com

There is no cost to attend.

We’ll have games, food, crafts, and lots of fun for the whole family.

Last year’s “Heart Shaped Desert Contest” was such a success that we are doing it again,
so please sign up to bring a heart shaped treat. Prizes for the winners.

 If that is a little too ambitious, you can also sign up to bring other easy edibles such as chips and soda pop.

We can’t wait to see everyone and to meet all the new families.

Please be sure to RSVP so we can get an accurate count for food.

 You can update your response if your plans change, just try to let us know within the week of the event. 

THREE-YEAR-OLD BRYSON Quinney of Lyman takes a practice swing during the Make A Wish home run derby last week. Star photos by Nicole Malicoat.

Students, community rally for local youth

By JACK H. SMITH
Staff Writer

While simple in nature, the meaning behind the sign has a far greater significance.

Surrounded by a hand written heart the sign reads “Bryson is our MVP.”

A few feet further into the school the signs begin to multiply and numerous students walking through the halls can be seen  wearing blue Make a Wish bracelets with Bryson’s name written on them.

They are all reminders of the student council’s 2010 Make A Wish event.

The child being sponsored by the council is 3-year-old Bryson Quinney of Lyman who was born with half a heart.

Thursday the final results of the students’ efforts will be made public, and they are hoping to hit their goal of $30,000.

The goal would be enough to fully fund his wish and the wishes of three other children with life threatening conditions.”

“The whole community has given to what is a great cause,” GRHS Principal Jamie Christensen said. “One of the things I am proudest of is the kids and sponsors. They do a lot of work for a couple of weeks.”

Junior Class President Taylor Mende said a lot of work went into planning the events, and they actually began working on them in November.

Just days from the results, council advisor Kris Weidner is pleased with the council’s efforts.

“The students have done a great job,” Weidner said.

Student Body President Sarah Pickle complimented local residents and said there has been a lot of community support.”

Student Council President Randi McClure has worked with the council’s Make A Wish program in the past and feels this year is different with having a local child involved.

“Bryson being involved has helped,” she said. “It’s a really touching story.”

Freshmen Class President Ryan Williams feels having Bryson on hand has really helped the community come together.

Pickle and several members of the council were able to meet Bryson a few days before Christmas.

“You get to know him,” Pickle said.

Bryson was also on hand last week for several events at the high school including a Home Run Derby.

Advisor Matt Freeze said Bryson was excited and high fiving everyone around.

For 3 hours, Bryson was non stop, Weidner said.

While too young to know exactly the meaning behind the event, Pickle said Bryson was still very excited.

At just 3 years old and with the help of council member Ashley Annable, Bryson sang the national anthem.

He was also presented with a baseball autographed by Adrian Gonzalez of the San Diego Padres.

The events also included a McWish night at the Green River McDonald’s.

According to Weidner, at one point during the 3-hour fundraiser, traffic was backed up from the restaurant to Uinta.

“It has been my most succesful fundraiser ever,” McDonalds owner Greg Bailey said. “The community got behind Make A Wish. It was impressive.”

The resturant was able to donate $773.92 of proceeds to Make A Wish. Another $900 plus was raised in donations.

With the goal of $30,000 still within reach Weidner is asking for help from the community at the conclusion of fund raising.

The goal came after Weidner talked with officials at Cody High School who were the top fundraisers in the state last year.

He said donations will be taken at the door.

Weidner added Bryson will be on hand for the games.

In the future, Weidner said the council plans on bringing Bryson back, and he will be on hand to kick off next year’s events.

Paul Cardall is well-known as a musician. His piano talents have been an inspiration to Utahns for years, but battle with heart disease has gradually taken his strength to the point it made making music impossible.

Cardall has been waiting for years to get a donor heart. His wife announced Thursday in his family’s blog about his health problems that he has received a new heart and seems to be responding well.

Here is the link to the Wall Street Journal article that was referenced during the Symposium at the Heart Camp today.

Little Hearts, Big Problems

Thanks again to all that organized, participated and attend the Heart Camp. It was a wonderful experience and something to look forward to for years to come!

Mike Patton Jr. remembers the agony he went through after learning his soon-to-be born daughter had a heart defect.

Brinley Patton’s heart was smaller than an almond when an ultrasound detected a problem just 22 weeks into Rebecca Patton’s pregnancy. “It’s kind of like being tied to the railroad tracks and the train is coming. I had never heard of a baby’s heart defect,” said Patton, of Riverton. “The feeling and emotion of the whole thing was one of loneliness and no support whatsoever.”

Today, Patton and Carolyn Quigley, of Santaquin, are working to ensure other parents of children with congenital heart defects get help through Intermountain Healing Hearts, a support group they have formed. So far, 53 families have connected with the support group, which has a Web site, www.intermountainhealinghearts.org, and a free telephone line, 800-397-1174. It also operates a Yahoo chat group, which gets 300 to 400 e-mail contacts a month.

Primary Children’s Medical Center performs about 20 heart surgeries a month, Patton said. “We’d like to see more research dollars put into finding out what is causing heart defects. Some are genetic, but most are not,” Patton said.

Kaidence Stephenson is one of the success stories that gives hope to parents. So is Brinley Patton, who was born in 2004. She had four heart surgeries in the first 30 months of her life; like many children with heart defects, she also had eye and hip problems that required surgery. Despite those challenges, she is a healthy, growing preschooler today, her father said. “I want to show [other parents] how well she’s doing, that there is hope for them,” Patton said. “Most of [our effort] is trying to get parents with [similar] diagnoses talking to each other.”

brooke@sltrib.com

Baby playing with toy

Son playing with Mom

Saturday, 09 February 2008
Janice Peterson – DAILY HERALD

Stores around the country have red hearts in windows and Valentine’s sales aplenty in anticipation of Feb. 14, but families across America will also be commemorating Congenital Heart Defect Week. Heart defects are one of the most common problems for infants at birth, with approximately one in 125 children affected.

The rate in Utah is about 6.3 per 1,000. Bonnie Midget, director of public relations for Primary Children’s Medical Center in Salt Lake City, said 300 babies with the problem were brought to the hospital between August 2006 and October 2007. Approximately 40 percent of those babies were diagnosed before birth.

Primary Children’s has the only pediatric cardiology program in a five-state area, and it handles 96 percent of all cardiovascular surgeries.

“Some kinds of problems must be treated immediately after birth,” she said. “Others receive surgery several months after the birth.”

Carolyn Quigley found out during her 20-week ultrasound that her baby would be born with heart problems. Every time she visited the doctor after that, she only heard more bad news. Hope Quigley was born April 24, 2000 and had open heart surgery the next day.

“The doctor gave her a one in five chance of even making it through surgery,” she said.

Hope made it through the surgery and improved, but she did not make it to her next surgery. On Sept. 11, 2001, Hope died at just four months old. Carolyn Quigley said she wanted to find a support group to help her, but there were not many at the time.

“I felt at the time that I was the only one going through this,” she said.

Over the next few years, Quigley said she found some support groups and met other families whose children had heart defects. Although she enjoyed the connection, Quigley said she could not find a group that was as social and involved as she would like. In September 2007, Quigley and other families started the Intermountain Healing Hearts support group.

“I just didn’t want to see there not be any support,” she said.

Quigley said members of the group have worked to ensure new parents have the support they need. Often they do not want to leave the bedside of their sick baby, so the support group brings information to them. The members also work with nurses and hospital staff to contact parents of new “heart babies.”

Quigley said Intermountain Healing Hearts has a Yahoo group for its members to communicate, and it has an “Angels” group for parents who lost their babies. In October, four group members lost their children, and Quigley said the group is a good place for them to mourn.

Quigley said many new members have joined in search of families who have experienced the same trials. The group now has more than 60 families, after starting with five. Christina Davis joined the group in September with 5-month-old Jacob.

Jacob was born with transposition of the great arteries, a condition in which the aorta and pulmonary artery arise from the wrong ventricle and the body cannot receive oxygenated blood.

“Right after he was born, he was considered a blue baby,” Davis said.

Jacob’s condition is one of the most undiagnosed defects before birth, she said. Although he did not appear to be breathing correctly, Davis was told some babies take a little while to get the hang of it. Jacob was whisked away from the delivery room after 10 minutes, with everyone but Christina close behind.

“I was left by myself to just worry,” she said.

Oxygen did not help Jacob, and seven hours after delivery he was taken to Primary Children’s Medical Center. Once he arrived, doctors were able to determine he had a heart defect, and Jacob had open heart surgery when he was five days old.

After Jacob’s birth, Davis said she too searched for a support group for her son’s condition, but had trouble reaching anyone. Davis said she wanted to connect with other families and have a better understanding of her son’s future.

“What will my child’s future be?” she said. “Where will he be 10 years from now?”

Davis said having a support group has been a big help to her. Seeing other families and their now-healthy children has helped her to have a positive outlook about how Jacob’s life will be. Just after joining the group, Davis said she met a family with a 4-year-old who has Jacob’s condition. Meeting older children who have experienced his defect has helped her to have hope that he, too, will be OK.

“You would never know by looking at them what they had been through,” she said.

As long as Jacob’s repaired heart holds up, he will not need any more surgeries. He will have yearly echocardiograms and will need a doctor’s permission before he participates in some sports.

Hockey and football are already out. Even healthy kids can have aneurisms in those sports.

Talking with other parents has helped Davis to understand her son’s limitations and what he can do. She said increasing awareness of congenital heart defects will help other families find support and information as well.

Intermountain Healing Hearts has posters at Primary Children’s, and members visit the cardiology unit to meet new parents who may need some help. As part of CHD week, the group will have an open house at the hospital today at 11 a.m. for families to get to know each other. A booth will be set up on the third floor, and 500 heart-shaped sugar cookies will be handed out.

Davis said her young daughter will also be involved in the efforts, handing out pamphlets at school on Valentine’s Day.

“When people think of Valentine’s Day, it’s more than just the romance stuff,” Davis said.

The group’s Web site is intermountainhealinghearts.org.