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Rock Climbing Brings Families Together, Builds a Community for Children With Limb Differences

July 20, 2018  |  Orthopedics and Sports Medicine, Patient Stories Post Comment

Ramon Little, 9, has been rock climbing since he was 5 years old. Seattle Children’s and Outdoors for All partner to give children with limb differences the opportunity to rock climb. Photo by: Scott Filipiak

This weekend, a group of Seattle Children’s patients and families got together outside the walls of the hospital for a unique social – to climb a 30-foot rock climbing wall. For 8 years, Seattle Children’s and Outdoors for All have partnered together to allow children with limb differences the opportunity to rock climb.

Dr. Suzanne Steinman, a physician in the Hand and Upper Extremity Program who helps organize the event, says the social is a way to provide families the opportunity to get together and for kids to see they’re not alone.

“Every child who attends the event has something in common: they all have unique limbs,” said Steinman. “From congenital abnormalities of the hand or foot, to losses from amputation or trauma, kids get to see other kids with arms and legs just like theirs.”

Kenna Chapman, custom events and program manager at Outdoors for All, added, “Events like this make me feel like our work really does enrich the lives of people through recreation.” Read full post »

One Mother’s Mission to Share Her Love of Books With Kids, Offers VIP Seahawks Experience

June 5, 2018  |  Craniofacial, Philanthropy Post Comment

Kai was first seen at Seattle Children’s Craniofacial Center when he was 5 months old.

Samantha Alexander first met Dr. Emily Gallagher, a craniofacial pediatrician in Seattle Children’s Craniofacial Center, when Alexander brought her 5-month-old son, Kai, to the clinic. Kai’s primary care doctor thought plates in his skull had fused together too quickly. He was evaluated for a metopic ridge, creating a point on his forehead.

While she feared he may need surgery, everything turned out fine. Alexander lovingly jokes, “He has a really big head.”

But from that initial clinic appointment, Alexander and Gallagher bonded over an unlikely love: children’s books. After the appointment was over, they chatted about their favorite books for nearly 30 minutes.

Alexander was an elementary school teacher before moving to Seattle with her husband, DJ Alexander. They moved in 2017 when DJ, a professional football player, was traded to the Seattle Seahawks. She had given up her teaching career, but she held fast to her love of books.

During that first appointment, Gallagher brought up a program called Reach Out and Read, which gives books to children 6 months to 6 years old during well-child visits. Gallagher started the program in the Craniofacial Center as a novel program outside of primary care. In the Craniofacial Center, pediatricians encourage families to read aloud together as a way to promote language development, with an additional focus on children with craniofacial differences who may face additional challenges with speech. Although Alexander’s son was too young for the program at the time, she says she instantly knew she wanted to help Gallagher expand the program.

Read full post »

Seattle Children’s Reaches Beyond Its Walls to Improve Mental Health Care for Kids in the Community and Across the Region

May 29, 2018  |  Mental Health, Patient Care Post Comment

There is a tremendous need for improved access to mental health care and resources for children and teens nationwide.

At Seattle Children’s, its commitment to helping address this need spans not only within the Seattle community, but throughout the region.

According to the U.S. Centers for Disease Control and Prevention, nearly 1 in 5 children have a mental, emotional, or behavioral disorder, such as anxiety or depression, attention-deficit/hyperactivity disorder, disruptive behavior disorder, and Tourette syndrome.

While early intervention is key in managing mental health issues, only about 20% of children with disorders receive care from a specialized mental health care provider.

That’s why Seattle Children’s is continuously working to enhance access to mental health services, promote education and research, and advocate for families affected by mental illness.

The following describes three of the many innovative programs and initiatives that Seattle Children’s offers to help improve mental health care for all children.

Read full post »

Emmy’s Journey to Overcome Cancer, From Small Steps to Miraculous Leaps

May 11, 2018  |  Cancer and Blood Disorders, Philanthropy Post Comment

When Emmy Cole was 2 years old, her mother noticed her struggling to walk. She grabbed her cell phone and tearfully recorded Emmy wince in pain as she took only a few, small steps. She knew something was terribly wrong with her daughter. Immediately after, they came to Seattle Children’s in search of answers. Emmy didn’t walk the rest of the day.

They received heartbreaking news. Dani and James Cole, Emmy’s parents, faced the unimaginable reality of helping their daughter through a devastating diagnosis: cancer.

On April 13, 2015, Emmy was diagnosed with high risk neuroblastoma.

Watch Emmy’s story from the beginning, from small, painful steps, to miraculous leaps. Read full post »

Baby Gets New Heart Just Before Turning 3 Months Old, Celebrates Milestone Transplant for Seattle Children’s

May 1, 2018  |  Heart Center, Patient Stories, Transplant Post Comment

At only 3 months old, Titus Sickles was brought back to life. Today, his family says they have a second birthday to celebrate: the day his new heart started beating for the first time.

“He’s a completely new baby,” said Rena Sickles, Titus’ mother. “He has a second chance at life now.”

In dire need of a new heart, Titus was listed for transplant at only 2 months old. Thirty days later, while Rena and her husband, Andrew, were leaving the hospital to go to dinner, they got a call.

“The call came and I just knew,” said Rena. “I looked at my husband and we just started crying.” Read full post »

Mother Donates Kidney to Save Her Daughter’s Life, Advocates for Donor Awareness

April 27, 2018  |  General, Patient Stories, Transplant Post Comment

At 4 months old, Raegen was diagnosed with congenital nephrotic syndrome.

Early on in Raegen Allard’s life, her mother, Francisca Allard, noticed something wasn’t quite right with her beautiful daughter. Raegen would seem upset after she ate and her stomach was enlarged. She also had a bruise around her belly button, which worried Allard further. At 4 months old, Allard took her daughter to the emergency room closest to their home in Snohomish. They told Allard she needed to be taken immediately to Seattle Children’s Emergency Department. When they arrived they received unexpected news: they weren’t going home. Raegan was admitted to Seattle Children’s Neonatal Intensive Care Unit (NICU).

Raegen was diagnosed with congenital nephrotic syndrome, a kidney condition that begins in infancy and typically leads to irreversible kidney failure (end-stage renal disease) by early childhood.

“I didn’t know what to do,” said Allard. “It was like I was watching life unfold in front of me and I had no control. All I could do was hold her hand. It was a whirlwind.” Read full post »

Agatha’s Dream of Walking to Her Local Ice Cream Shop Comes True

April 26, 2018  |  Orthopedics and Sports Medicine, Patient Stories Post Comment

On Saturday morning, 10-year-old Agatha Holloway’s dream came true. Photo credit: Katie McCullough Simmons.

On Saturday morning, nearly 50 people gathered outside of 10-year-old Agatha Holloway’s home in the east central Seattle neighborhood of Madison Park to support the little girl with an incredible dream and fierce determination.

Her dream was to walk to her local ice cream shop, a journey that until recently seemed impossible. Read full post »

Jack Finds Strength Through His Disability, Inspires Others

April 20, 2018  |  Orthopedics and Sports Medicine, Patient Stories Post Comment

Jack Clark, 12, shows off his dance moves on skates.

Jack Clark, 12, was born to stand out. He excels in sports, lights up a room with his infectious smile, amazes bystanders with dance moves on skates, and walks with a gait unique to him – with a prosthesis covered in flames. Jack was born with a disability, but he’s never let it slow him down. From the wrestling mat, to the roller skating rink, he always finds a way to thrive in the face of adversity.

“Most people see my disability as a disadvantage, but personally I see it as an advantage,” said Jack.

Jack was born with rare conditions affecting both of his legs – proximal femoral focal deficiency (PFFD) in both thigh bones and fibular hemimelia in the left lower leg. Isolated PFFD occurs in about one in 50,000 children and fibular hemimilia occurs in about one in 40,000 children. Read full post »

Doctors Double the Length of Anna’s Arms, Giving Her Independence

March 21, 2018  |  Orthopedics and Sports Medicine, Patient Stories Post Comment

Lisa went into labor expecting her daughter wouldn’t survive.

Lisa Booth was 40 weeks and 6 days into what had been a completely normal pregnancy when she received unexpected news during an ultrasound.

“Everything was fine at 9 a.m. At noon, I was told my daughter would be a dwarf. By 4 p.m., I was told she wasn’t going to survive,” said Booth. “I went home in a completely shell-shocked state.”

Hours later, Booth went into labor expecting the worst.

“Going into labor I was thinking she wouldn’t survive,” she said. Read full post »

Agatha Comes One Step Closer to Her Dream Come True

March 14, 2018  |  Orthopedics and Sports Medicine, Patient Stories Post Comment

Agatha and her brother order ice cream at their favorite ice cream shop, Scoop Du Jour.

Nearly half a mile away from 10-year-old Agatha Holloway’s home is a quaint family owned ice cream shop called Scoop Du Jour. It’s her favorite ice cream shop, and she’s always dreamed of being able to walk there. But until recently, that journey was physically too far for her to walk.

Agatha’s declining mobility made walking long distances impossible, but today, thanks to Seattle Children’s Orthopedics and Rehabilitation Medicine teams, Agatha’s dream has come true. Read full post »