Patient Stories

All Articles in the Category ‘Patient Stories’

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

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 »

Born With a Foot Deformity, Chloe Inspires Others to Stand Beautiful

Chloe Howard, 18, was born with a severe and atypical form of a common foot deformity called clubfootAbout one in every 1,000 babies is born with clubfoot. She underwent two extensive operations on her foot in California before her first birthday. After she and her family moved to Seattle, she underwent a final corrective surgery at Seattle Children’s. Throughout her childhood, she wore corrective casts and braces and spent countless hours in the hospital. 

After being bullied and assaulted by her classmates in high school because of her deformity, Howard bravely decided to stand up and share her story in hopes that her words would inspire others to embrace their imperfections and end bullying. Today, she’s the author of the book “Stand Beautiful,” and is on a mission to redefine beauty. Below is her story and powerful message to others. Read full post »

Baby Makes Miraculous Recovery Days After Spinal Cord Injury

Bear Brother, 1, underwent emergency spine surgery when he was diagnosed with a neurological condition known as a Chiari malformation.

Instead of picking up balloons and cupcakes, Lisa Hannigan and Robert Brother found themselves waiting in the Pediatric Intensive Care Unit (PICU) at Seattle Children’s one day before their son’s first birthday. In less than 36 hours, they had watched as their perfectly healthy son, Bear Brother, lost use of his arms and hands before he was rushed into emergency spine surgery for a neurological condition known as a Chiari malformation.

“It all happened so quickly,” said Hannigan. “After Bear’s daycare called me at work, we got to the Toppenish emergency center around 10 a.m. First thing the next morning he was going into surgery at Seattle Children’s.” Read full post »

Rosy Finds Pride in Her Gender Identity

In honor of LGBT Pride Month, Rosy Delamarter, a 17-year-old patient at Seattle Children’s Gender Clinic, shares her story about discovering her gender identity, the happiness that it brought her, as well as the support she found from friends, family and others in her life during her transition.

For years something inside me felt “off.”

As a little kid I never thought much of the fact that I had been assigned male at birth. Gender roles were equally unimportant in my mind — I played with Hot Wheels and Polly Pocket toys without a second thought. I was a little kid, after all.

It wasn’t until elementary school when I started hanging out with macho, playfully aggressive boys that I became critical of my own gender expression. I didn’t just stop playing with Polly Pocket toys; I was embarrassed that I had ever even touched them. After all, I was a boy, so I was supposed to shoot Nerf guns, punch my friends and gag at everything pink, right?

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Star Athlete Sisters Are ‘Twinning’ When It Comes to Tackling Celiac Disease

Through Seattle Children’s Celiac Disease Program, twin sisters Claire and Emma learned how to adopt a new gluten-free diet in to their active, athletic lifestyle.

Claire and Emma Brennan are 13-year-olds who are always on-the-run.

Whether it’s sprinting across the basketball court or flying to their next volleyball tournament halfway across the country, these twin sisters stop at nothing to achieve athletic excellence.

“Claire and Emma have sports practice almost every day of the week,” said their mother, Cathy Brennan. “We’re always on-the-go, so I have to make sure they have easy access to snacks they can eat to keep energized.”

The active teens burn calories at a rapid pace given their hours of intensive sports practice, and so a balanced diet is key to performing at their best.

However, food prep takes some careful planning in the Brennan household as both girls are on a strict gluten-free diet to manage celiac disease, an autoimmune disorder that they were diagnosed with in September 2017.

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Lifesaving Experience Inspires Kindergartner to Donate Birthday Gifts

Hannah Mae Campbell, 6, received a lifesaving heart transplant at 4 months old. She recently donated her birthday presents to Seattle Children’s.

Last month, 6-year-old Hannah Mae Campbell wanted to invite her entire kindergarten class to her birthday party. However, Hannah decided that she couldn’t possibly keep all of the gifts herself; rather she told her mother that she wanted to give them to kids at Seattle Children’s.

She said she wanted to give kids something to play with that would help them “have fun” and “feel happy,” since being at the hospital can sometimes be sad. Surpassing her original goal of donating 20 gifts, Hannah and her family delivered 139 toys and books to the hospital. The activities included Lego sets, Play-Doh, My Little Pony, Hot Wheels, puzzles, coloring books, dolls, superheroes and stuffed animals.

“Everyone says she’s such an old soul who is always wanting to help others,” said Jennifer Campbell, Hannah’s mother. “A lot of it may have to do with growing up a little quicker in a hospital. Hannah has experienced things like blood transfusions and surgery that a lot of kids have never had to go through.”

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A Teen Transforms Her Pain Into Soulful Melodies


Emily Talbot, 17, shares her story about her lifelong battle with a rare brain disease and how she has overcome the physical and mental health challenges caused by the condition through writing and performing music.

Although I look like any other 17-year-old, people don’t know that I live in pain 24 hours a day.

Since the age of 7, I have had 14 brain surgeries, 12 back surgeries and 6 stomach surgeries. I can’t begin to count how many spinal taps I’ve had.

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Dying Baby’s Path to Lifesaving Transplant Sheds Light on Disparities in Pediatric Organ Donation

Picturing her daughter making it to her first birthday was difficult for Rachael Rowe as she watched her baby struggle to survive each passing day waiting for a liver transplant.

Time officially took its toll on Feb. 6, 2018 — four months after 10-month-old Raylee was put on the transplant waiting list.

“I remember it was 3:00 a.m. in the morning when I heard Raylee screaming in pain,” said Rowe. “Never in my life had I heard a baby cry like that before. It was terrifying.”

After spending three hours trying to comfort her normally smiley and happy baby, Rowe took Raylee to the emergency room near their home in Portland, Oregon.

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Rebounding Back to Life, Dominic Perseveres Past Pediatric Stroke

Dominic Donati, then 9, eating for the first time six days after he suffered multiple strokes.

Sometimes it is the simplest of moments that can bring a family with a child in the hospital the most hope. For Tony and Laurie Donati, such a moment occurred when a neurologist at Seattle Children’s Neurosciences Center handed their son Dominic Donati a pen and paper and asked him to write a sentence only days after suffering multiple strokes.

Unable to speak at the time, Dominic, then 9, wrote, “Hi. My name is Dom.”

“It makes me cry every time I think about him writing this incredibly simple sentence,” Laurie, his mom, said. “Dominic’s stroke was the most awful thing that has ever happened to our family. I think everyone in the room felt excited because it was the first time we knew that he could still communicate with us.” Read full post »

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

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 »