Giving to Children's Winter 2014

Giving to

Children’s Inside this issue: All about family-centered care An inspiring NICU story The extraordinary kids of KidStreet

WINTER 2014

A celebration of gifts to Children’s Hospital Colorado

Familycentered care: A win-win for all

VOL. 7, ISSUE 3

Any parent who has managed the day-to-day struggles of raising a child with medical issues will tell you that it can be very stressful.

And while Children’s Hospital Colorado focuses first and foremost on healing our patients, we also recognize the critical role of the family in a patient’s long-term health. That is why family-centered care is a critical component of Children’s Colorado’s treatment approach – and one of the many things that sets us apart.

With multiple programs and resources to support patients and families, Children’s Colorado threads a family-centered approach to care throughout all aspects of our hospital and mission. It begins with calming, colorful, welcoming spaces in each of our care locations – meant to make an otherwise unpleasant experience as cheerful as possible – and extends to every interaction a family has within our network.

(Continued on page 3)

childrenscoloradofoundation.org

Children’s Fund

makes an impact Children’s Fund gifts are unrestricted donations used for Children's Hospital Colorado’s greatest needs, providing the hospital with greater flexibility to care for our young patients. Donations to Children's Fund help to: • Provide resources for parents, siblings and family members, so they are better equipped to support patients • Treat all children, regardless of ability to pay, because we believe all kids deserve the opportunity for good health • Cover the cost of care that government aid programs do not • Make groundbreaking strides in research through studies that are leading to more effective treatments and cures for childhood illnesses • Support physicians and their patients in rural mountain communities • Meet the region’s unique pediatric health needs via a diverse care network of nearly 2,000 pediatric specialists and 5,000+ employees We strive to provide each child we care for – as well as each child’s family – with the best possible health care experience and outcome. Gifts to the Children’s Fund help us do just that.

Giving to transform lives Dear friends, Our work at Children’s Hospital Colorado Foundation is really pretty simple: We engage our community as a partner to provide hope for the patients and families who come to us for care. And last year almost 200,000 families came to us.

As you might expect, these families represent all cultures, sizes and types.

Children’s Colorado has been nationally recognized for our ability to support these families. In fact, Parents magazine voted us as the No. 1 children’s hospital in the country for “Family Friendliness.” But our commitment to families goes way beyond friendliness. We seek to deeply impact a child’s health and well-being by supporting and nurturing a family’s ability to participate in a child’s critical medical decisions, as well as their day-to-day health.

We thank you, as members of our community, for the many ways you support the hospital’s work. Whether you are riding and fundraising for the Courage Classic, calling in a donation through one of our radiothons, attending our annual Gala, or making a gift of another kind, every child and family who walks through our doors is a benefactor of your generosity. They feel your support, even if they may never meet you.

We live in a community that highly values Children’s Colorado’s mission to improve the lives of kids and their families. Your support fuels innovation, discovery and research that leads to more hope and more cures – all in a patient and family-centered hospital.

We, like you, imagine a world where every child has the opportunity to grow up healthy. Thank you for joining us as we work to make this vision a reality.

In appreciation,

Steve Winesett President and CEO Children’s Hospital Colorado Foundation

2 Giving To Children’s

Familycentered care: A win-win for all

(Continued from page 1)

Based on an all-inclusive approach to caring for patients, Children’s Colorado strives to develop genuine partnerships between providers and families. Family circumstances are inextricable from a child’s health outcomes, and with the help of generous donors, Children’s Colorado is able to go above and beyond to help parents, caregivers and siblings as they participate in the medical, emotional and social needs of our patients.

Whether it is the NICU nurse taking the time to truly explain a newborn baby’s treatment plan to a parent or the child life specialist who uses therapeutic play to help a patient cope with the hospital setting, we seek out every opportunity to support a family on their child’s path to health.

A true partnership

Better, wiser care involves partnering with the true and consistent experts in a child’s life – families – to provide a comprehensive and collaborative approach to treatment. As part of the family-centered care philosophy, doctors at Children’s Colorado work closely with parents to identify the best possible treatment plan.

“It goes without saying that nobody knows a child better than his or her family,” said pediatric cardiologist Dr. Michael DiMaria, who has implemented “family-centered rounds” at the Children’s Colorado Heart Institute to better involve parents in the health care decisions of his patients. “That’s why we believe that health care staff and patient families should be partners.”

Dr. DiMaria believes families can provide valuable input to providers – for example, which types of behaviors are personalityrelated and which are indicators that things are not quite right. Similarly, providers can help families understand how to continue to treat and heal patients once they’re discharged.

“Ultimately, the goal of family-centered care is to get your child home, feeling well and able to participate in all of the things that go into being a healthy, happy kid,” said Dr. DiMaria.

Donor support

The extra touches that go along with family-centered care can make all the difference in a patient’s experience.

Yet many of these services are not reimbursable under insurance plans.

That’s where donors come in to help.

For example, the Violet M. Johnson Family Foundation has been a long-time supporter of the Patient Family Assistance Fund, which provides a lifeline for families trying to keep ahead of basic necessities and daily living expenses while being displaced from regular routines by an ill child. Whether it’s helping to cover the cost of prescription co-pays or a special needs car seat, our team of social workers can help to address situational hardships while working to set families up for success in the future.

Other donors have helped Children’s Colorado build a robust arts therapy program. Established in 2005 with a donation from the Ponzio family, the Ponzio Creative Arts Therapy Program

uses art, music, dance, movement and yoga as tools for communication, emotional release and healing. Other generous donors have supported specific areas of arts therapy, such as Katharine and James Raybin, whose gifts have helped to support the work of Pat Mowry, a Masters-level creative arts therapist who works in the Center for Cancer and Blood Disorders (CCBD). The Raybins’ gift was inspired by Jenny Madden, a pediatric Nurse Practitioner at the CCBD, whose passion is not only to bring creative arts therapy to kids with cancer, but also to research its effects on their quality of life.

Children’s Colorado recognizes that a family-centered approach results in a better allocation of health care resources, greater patient and family satisfaction, and ultimately better outcomes for our children. With the help of our donors, we can continue to create a future of possibility for patients through familycentered care.

winter 2014 3 Winter

about

family-centered care All

Offering a wide array of services to support families Family-centered care is a core value at Children’s Hospital Colorado. It’s reflected in everything from our treatment philosophy and therapy programs to our recreational offerings and physical spaces.

Below are just a few of the ways that Children’s Colorado helps to make a difficult hospital experience as easy as possible for patients and families.

Best of all, these services are available to everyone who walks through our doors, regardless of financial circumstance.

Therapeutic Recreation Our incredible team of Child Life Specialists help patients and families adjust and cope during their hospital and clinic stay. From allowing a child to role play with pretend medical equipment before a big procedure to doing bedside therapeutic play to aid in recovery, specialists use ageappropriate activities to help children understand their treatments and reduce anxiety.

Family Hospitality Suites Hospitals aren’t exactly known for being homey. That’s why we've created comfortable spaces where family members can relax, including six private Family Hospitality Suites.

Rooms have a private bathroom and access to a kitchenette, laundry facility, and living area with TV and internet– all designed to make the hospital setting feel a bit more like home.

Respite Areas and Gardens Hospital situations can be stressful, so we offer families multiple spaces where they can take a quiet moment for themselves. Every inpatient floor

4 Giving To Children’s

includes a designated quiet area, while the outdoor Garden of Hope offers a walking maze and park-like spaces where families can take a break.

Creative Play Center Certain hospital appointments require a parent’s full attention, but that can be difficult with a sibling tagging along. Staffed by trained volunteers, the Precourt Family Creative Play Center offers a fun and safe area where brothers and sisters from newborn to age 8 can be entertained free of charge while mom and dad are occupied.

Chapel and Spiritual Care Our on-site chapel provides a sanctuary for people of every faith to pray, meditate, reflect or simply enjoy a few peaceful moments.

Full-time pastors are available to provide patients and families with counseling and spiritual support. Our Spiritual Care Department also offers “Colors of Healing,” a family-centered bereavement program that provides support following the unthinkable loss of a child.

Teen Lounge Just because a teenager is hospitalized doesn’t mean that he or she stops being a teen. With a pool table, basketball arcade hoop, video game area and big screen movie theater, our newly-renovated Patricia Crown Family Teen Lounge brings some normalcy and fun to our teenage patients’ days.

Creative Arts Therapy The Ponzio Creative Arts Therapy Program uses the healing power of the arts to help children deal with pain and express themselves. Art therapists use art, music, dance and yoga as tools for communication, emotional release and healing. The hospital also has two galleries for revolving art exhibitions, as well as several permanent art installations throughout the facility.

Medical Interpreters It’s critically important that families fully understand their child’s medical circumstances, so Children's Colorado offers interpretation services free of charge in 40+ languages for nonEnglish speaking and hearing impaired families. Every inpatient room is equipped with a blue phone solely dedicated to interpretation, so a native language speaker can be accessed with the push of a button.

Social Workers Having a child in the hospital can turn your world upside down. Many families are forced to take extended time off work or travel long distances to attend to their child’s medical needs.

Not only does our team of 50+ social workers provide families in crisis with emotional support, they can also assist with short-term financial pressures, such as helping to cover essential medications or travel expenses.

Family Advisory Council: Making parent voices heard Comprised of parents, hospital leadership and staff, the Family Advisory Council is the driving force behind family-centered care at Children’s Colorado. They meet once a month to provide direct input on hospital policies and procedures.

The Council also sets the overarching vision, oversight and guidance for family-centered care. They are currently implementing a campaign called “Did you ask a Parent?” that’s designed to educate staff on how to better involve parents in hospital decisions.

In addition, Children’s Colorado also has a Youth Advisory Council for current and former patients ages 13-18 to provide input and suggestions on hospital programs.

Together these two groups work to make patient and family voices heard, ensuring that Children’s Colorado will continue to provide outstanding care in a compassionate, familyinclusive way.

winter 2014 5

hope Baby inspires

at Children's Colorado Neonatal Intensive Care Unit Heather Faith wasn’t expected to survive. In fact, the vast majority of babies with her condition –Complete Trisomy 22– don’t make it past the first trimester of gestation.

But Heather defied the odds from day one, and for 13 months she not only survived but thrived.

Tragically, Heather passed away due to complications resulting from her disease last January.

typically causing severe malformations. “The doctors told us that average life expectancy was 4 days,” said Jessica. “The fact that she was born and born alive was a miracle in itself.”

“The 13 months that we had with Heather were incredibly special,” said Heather’s father, Thomas Lohmeyer. “We weren’t sure what the future was going to hold, so we made the most of every day, every moment.”

Heather had many medical issues as a result. She was born with three holes in her heart and only one kidney. She had gastrointestinal issues that necessitated a feeding tube, along with other abnormalities.

But Thomas and Jessica were determined to do all they could to help their daughter live as long and as full a life as possible.

Living in North Dakota at the time, Thomas’ wife Jessica had a “perfect pregnancy.” But when Heather was born on New Year’s Day 2013, it was clear that something was wrong. Heather wasn’t breathing properly and had to be put on a ventilator.

A pediatrician told the new parents he suspected chromosomal abnormalities and recommended transferring Heather to the Children’s Hospital Colorado Neonatal Intensive Care Unit (NICU). Within hours, Heather was on a Flight for Life plane.

Doctors at Children’s Colorado soon diagnosed Heather with Complete Trisomy 22, an extremely rare syndrome in which an extra (third) copy of chromosome 22 is present in every cell of the body,

6 Giving To Children’s

Heather spent the next several months in the NICU, and while it was very difficult, the Children's Colorado care team went above and beyond to help the family.

From providing emotional support to taking the time to ensure that the new parents truly understood their daughter’s treatment plan, Jessica said that the familycentered care at Children’s Colorado was outstanding.

“Our medical staff formed a family,” said Jessica. “They loved Heather and loved us, and they did everything they could to enhance our family’s quality of life.

It was the best experience that we never wanted to have.”

Heather continued to make progress, and at 3 months and 5 days old, she was finally able to go home. The family relocated to Colorado Springs so that they could be closer to Children’s Colorado and the best possible care for Heather’s complex condition.

Over the coming months, Heather continued to grow, hitting milestones that many thought impossible. At 5 months old on Father’s Day, Heather smiled for the first time. Months later, she learned how to do the sign for “Mommy.” At 10 months, Heather dressed up as a butterfly for her first Halloween, and she met Santa before her first Christmas. By 12 months Heather learned how to giggle to the delight of her parents. “She got to experience all her firsts,” said Jessica.

Yet one of Heather’s best firsts was her first birthday, when Jessica and Thomas threw a huge pink party with all their family and friends. It was the last time that they would all be together before Heather passed away.

“She beat all the odds,” said Jessica.

“I feel that part of her purpose was to restore hope in people.”

The Lohmeyer family with Children’s Colorado neonatologist Dr. Laura Brown

Our best for babies: Children’s Colorado NICU is a nationally recognized leader in the treatment of critically ill infants. Our state-of-the-art facility is the only NICU in an eight-state region with the experience and technology to treat virtually any medical condition affecting newborns.

What makes us so great?

• Ranked #4 neonatal program in the country by U.S. News & World Report • 84 critical care beds to treat nearly 1,000 babies every year • A Level IV NICU, the highest distinction granted by the American Association of Pediatrics • Outstanding familycentered care • Spacious private rooms and a home-like setting • One of three hospitals in the country with a Milk

“They took incredible care of Heather, but they also took care of us. We’re forever grateful to our medical team”

Lab to store and prepare

– Thomas Lohmeyer,

breast milk

Heather’s father

• A pioneer in life-saving neonatal research and developments

winter 2014 7

KidStreet

Extraordinary kids

get extraordinary treatment at On any given day at KidStreet, you’ll see extraordinary things

Operated by Children’s Hospital Colorado, KidStreet is a unique rehabilitative care facility for children ages 6 weeks to 4 years who have complex medical needs –children like 1-year-old Holly who has spinal muscular atrophy and 2-year-old Casper whose body does not produce the neurotransmitters necessary for normal brain function.

At KidStreet, these children can get the personalized care they need to help them thrive– care that would never be possible in a traditional daycare or preschool setting.

Located in east Denver, KidStreet offers an interdisciplinary team of pediatric nurses, therapists, teachers, care coordinators and others who work together to maximize the potential of the children they serve.

“Sometimes people come here and think it’s a sad place, because of the challenges these children face,” said Karen Terry, clinical manager of KidStreet. “But if you change your perspective, you see that each day these children can do more, and it becomes a happy place.”

KidStreet has made all the difference for 3-year-old Dylan, who came to the program after suffering severe burns in a home accident two years ago. For months, Dylan could barely talk or move. Yet since coming to KidStreet, Dylan

8 Giving To Children’s

has made huge strides, particularly in his confidence and ability to connect with other children. "KidStreet has helped him so much," said Dylan’s mom, Angelica. "It's like our second home now; it's another family."

The medical staff at KidStreet attend to the children’s medical needs –for example, assisting kids who require a ventilator to breathe or a feeding tube to eat– while a team of therapists work with the children on their physical and cognitive abilities. There’s a speech therapist to help with language skills, an occupational therapist to develop social skills, a physical therapist to work on motor skills, and a special education teacher to develop personalized learning curriculums.

Children are also exposed to weekly art and music therapy.

Terry says that staff members work to integrate all the various therapies into the children’s daily activities.

Whether it’s teaching sign language during a diaper change or working on physical milestones during recess, part of what makes KidStreet so effective is the multi-disciplinary approach to care. “Everyone is working together on the same goals for these kids, all day, every day,” said Terry.

All of the children at KidStreet come from low-income families, many of whom have significant social needs.

The children attend the program five

Children in KidStreet's Sweet Pea classroom participate in music therapy.

Did you know?

KidStreet offers comprehensive care for children with complex medical needs. This licensed care center offers a variety of services, including: • Individualized plans created in collaboration with staff, health care professionals and the family • Handicapped accessible facility with adaptive play centers • One-on-one counseling sessions • Treatment room for children with ventilators or other complex medical equipment • Opportunity to interact with similarly aged children and more

days a week free of charge, often so that parents can attend school or go to work. Without KidStreet, many of these families would have no other childcare options outside of the home.

or she can be transitioned into a traditional classroom setting. Last year, KidStreet graduated seven of its children – many of whom were never expected to be able to attend public school.

“These are families whose lives are in crisis,” said Terry. “We’re here to improve the children’s independence and encourage their development, but we also want to enhance the family’s ability to function.”

“More often than not, these kids accomplish more than we ever expected,” said Terry. “We raise the bar for them.”

KidStreet gives parents resources to help improve their ability to care for a special needs child. For example, the staff provides video recordings of therapy sessions, so parents can practice new skills at home. They also offer the services of a mental health worker who can provide one-on-one counseling sessions.

For the staff at KidStreet, there is no greater success than seeing a child progress to the point that he

Support

Children’s Colorado For more information about how to make a donation to KidStreet please call 720-777-1700

winter 2014 9

Fall events roundup Luncheon honors Tammen Society members

Generous donor

leaves legacy through planned giving Anyone, no matter their age or income level, can make a legacy gift. Rhonda Kay’s generosity spurred her, after years as a hospital volunteer and donor, to include Children’s Hospital Colorado in her estate plans.

Rhonda began volunteering as a young child. “I’m just wired that way,” Rhonda says. After moving home to Colorado in 2002, she decided to devote some of her free time to Children’s Colorado. She walked through the doors of the hospital and felt like she was home.

This year’s Tammen Society and Loyal Donor luncheon was held on September 18. The keynote speaker, 9-year-old cancer survivor Jamie, shared her inspiring comeback story with nearly 175 donors. She was joined by her doctor, Brian Greffe, M.D. The Tammen Society honors all individuals who have thoughtfully named Children’s Colorado in their will or through other life-income or planned gifts.

Investiture event celebrates new endowed chair More than 120 guests gathered on October 8 to celebrate the establishment of The Cille B. and Ronald W. Williams Endowed Chair in Executive Leadership. The event honored Children's Colorado CEO, Dr. Jim Shmerling, as the inaugural chairholder.

Initially, Rhonda spent four days a week as a volunteer, supporting children and families during the toughest fights of their lives. She continues to admire those patients.

“It’s a way that truly anyone can make a significant gift without draining your bank account. It was important to me to make sure that my support of Children’s Colorado carried on beyond my lifetime,” says Rhonda.

During her lifetime, Rhonda has the satisfaction of knowing that she has done everything she can to help the kids she loves and admires.

“I see their spirit, their energy and their courage,” she says.

The generous spirit Rhonda has nurtured since childhood continues to benefit Children’s Colorado—and will do so well into the future. A few years ago, Rhonda quietly included Children’s Colorado in her estate plans by making the hospital the beneficiary of her life insurance policy. She eventually decided to Rhonda with Bob Diack at a recent donor event. share her planned gift in order to inspire others and to let people know how easy it is to make a future gift to Interested in learning more?

Children’s Colorado.

For more information about how to include Children’s Colorado in your estate plans, contact Sharon McMeel at 720-777-1777 or smcmeel@childrenscolorado foundation.org.

10 Giving To Children’s

37th annual 1

Children’s Gala entertains supporters with art and music

3

2

Generous supporters from across the Rocky Mountain region came together to create a lively 37th annual Children’s Gala benefiting Children’s Hospital Colorado.

One of Denver’s premier annual black-tie events, the Children's Gala took place on Sept. 27 at the Hyatt Regency Denver. Nearly 1,400 guests turned out for an incredible evening in support of the hospital that included music, art and stories of hope from our patients.

9News anchorwoman Kyle Dyer was outstanding as the event’s emcee, but it was an 11-year-old patient named Anicee who stole the show during the live auction. Anicee has osteogenesis imperfecta, a genetic disorder that causes extremely brittle bones. She has undergone multiple surgeries at Children’s Colorado and has since become an accomplished painter.

1. Noah, a former patient, performs a concerto he composed ; 2. Richard and Cathey Finlon; 3. Foundation Board Chair Laura Barton and her husband William Matthews; 4. Barenaked Ladies perform for nearly 1,400 Gala guests; 5. Children’s Colorado Ambassador Anicee with 9 News anchor and Gala emcee Kyle Dyer; 6. Barbara and Ed Greene with Foundation Board Secretary Molly Broeren; 7. George and Carol Solich;

4

5

One of her original works of art sold for $50,000 at the event’s live auction, while another bidder pledged an additional $50,000 for a special commissioned piece from the young artist.

Headlining this year’s event was the chart-topping Canadian rock band Barenaked Ladies, who brought the crowd to their feet with a rocking performance. Opening for Barenaked Ladies was 13-year-old Children’s Colorado patient Noah, who performed a violin concerto that he composed himself.

Thank you to everyone who volunteered, attended and sponsored this year’s event, which brought in gifts totaling more than $1.7 million.

6

Save the date 2015 Children’s Gala: Oct. 17

winter 2014 11 Winter

7

Children’s Hospital Colorado Foundation Anschutz Medical Campus • 13123 E. 16th Ave., Box 045 • Aurora, CO 80045 • childrenscoloradofoundation.org

NON-PROFIT ORGANIZATION U.S. POSTAGE PAID DENVER, CO PERMIT NO. 3978

Giving to Children’s is published three times yearly

by Children’s Hospital Colorado Foundation Editors: Megan Lane, Tina Garbin Contributors: Laura Esterley, Ashley McGregor, Kelly Sterner Designed by: Catrine Watt Printed on recycled paper © Children’s Hospital Colorado Foundation

2013

PHILANTHR OPY REPORT

1

View the Annual Report online:

bit.ly/2013PhilanthropyReport

do Colora spital ren’s Ho at Child

View for the Endowed Chairs Book online:

childrenscoloradofoundation.org/EndowedChairsBook

Thank you for your support!

Save the date

We are pleased to announce these 2015 events benefiting Children’s Hospital Colorado:

RADIOTHON Feb. 12-13, 2015 CLIMB FOR COURAGE

June 27, 2015

COURAGE CLASSIC July 18-20, 2015

Ask us

CHILDREN’S CLASSIC AT SANCTUARY

August 10, 2015

CHILDREN’S GALA Oct. 17, 2015

Enterprise Zone Tax Credit!

about the An easy way to support Children’s Hospital Colorado

Do something great for your community while reducing your tax liability.

Colorado residents who make qualifying gifts to support Children’s Colorado are eligible for a generous 25 percent credit against your Colorado income tax.

To learn more, call 720-777-1700 or visit childrenscoloradofoundation.org/enterprisezone