Patient Stories

All Articles in the Category ‘Patient Stories’

Like Mother, Like Daughter: Sharing a Craniofacial Care Team and Condition

Twins Melody (top) and Lyric Allen were born amidst the COVID-19 pandemic. Melody, like her mother, was born with a condition called craniofacial microsomia and needed care through in-person and telehealth appointments provided by Seattle Children’s Craniofacial team in the immediate days, weeks and months following her diagnosis.

Just weeks after the state of Washington went under shelter-in-place guidelines, Jenalysse Renaud gave birth to two beautiful babies on April 17, 2020. Renaud and Donovan Allen, the twins’ musician father, named them Melody and Lyric.

Melody, a whole two minutes older than her little brother, faces a few challenges. Her left eye is smaller than her right and is being monitored for potential blindness. In addition, she likely has hearing loss or deafness in one ear, all features of hemifacial microsomia. After several tests, she was also diagnosed with malrotation— an abnormality in which the intestine does not form in the correct way in the abdomen—at just a month old. Thankfully, she shouldn’t face any prolonged consequences from that diagnosis after undergoing corrective surgery in May.

Renaud herself was born with hemifacial microsomia, the same condition Melody now faces. Craniofacial microsomia, also known as hemifacial microsomia, is a congenital condition in which the tissues on one side of the face are underdeveloped—as well as some hearing loss. Renaud was also born with a solitary left kidney. Read full post »

From Stunning Diagnosis to Unexpected Hope: MEK Inhibitor Proves Amazing for Grace

Despite a lifetime of medical setbacks, you’ll almost always find 18-year-old Grace Carney smiling.

Grace Carney was 16 years old when she first began falling. Before long, she was falling every day. It got so bad that she had to rely on other people — family members at home and aides at school — to help her walk.

For Grace, this was the latest in a lifetime of medical setbacks, many of which stem from neurofibromatosis type one (NF1), a genetic disorder that causes tumors to grow all over the body, including under the skin and on the nerves.

To improve Grace’s ability to walk, a doctor in Spokane recommended a major orthopedic surgery. But as the Carneys prepared for that surgery, an MRI result flipped everything upside down and brought them to Seattle Children’s, where Grace received an innovative medical treatment that changed her life and could do the same for countless others with NF1. Read full post »

Reason to Celebrate: The Graduating Class of 2020

The patients at Seattle Children’s inspire. Through their tremendous stories, we have the opportunity to learn about what it means to be brave—what it means to persevere. Monumental accomplishments demand to be celebrated.

Over the years, Seattle Children’s has had the honor of sharing the incredible stories of our Patient Ambassadors. Several of those that already shared their personal and trying stories have reached a new milestone: graduation. Though 2020 has been one of the most challenging years in decades, the tremendous accomplishments of our patients are all the reason to celebrate.

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“You Don’t Have to Know Yourself Right Away”: Iris Shares Her Journey of Self Discovery As a Transgender Woman

In honor of LGBTQ+ Pride Month, Seattle Children’s patient Iris shares her story as a self-identified transgender woman and offers advice on how you can support the mental health and well-being of other transgender youth.

In July, Lisa picked up her 17-year-old, who had been identifying as gender non-binary, from summer camp. When her teen got into the car, they had news.

“I want to change my name to Iris and I am going to use feminine pronouns from this point forward.”

Lisa remembers her light-hearted response. “I just said, ‘Okay. But you may have to give me a minute to adjust.’”

For Lisa, this was not a tremendous, earth-shifting announcement. It was just another opportunity to support her daughter’s journey of self-discovery.

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Dr. John McGuire Shares His Son’s Challenges with Mental Health

I have worked at Seattle Children’s for 16 years and have been the Chief of Critical Care Medicine since 2013. My son Peter just turned 17. He recently “celebrated” his birthday at a therapeutic boarding school where he is in residential treatment for anxiety and depression. Although he was in and out of outpatient therapy for several years and was hospitalized at the Seattle Children’s Psychiatry and Behavioral Medicine Unit (PBMU) for severe depression at age 13, I rarely discussed his mental health with my colleagues. Most of the people I worked with regularly were unaware that coping with Peter’s anxiety and depression was part of my daily life. I used to think it was something private to keep to myself. However, I now realize it was my inability to address my own fear that kept me silent. I retreated into my job, and, at work, I could be the confident physician and ICU leader rather than the uncertain, anxious parent who didn’t know how to help his struggling son.

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Providing a Safe Environment for Routine Care During the COVID-19 Pandemic

My teenage son, Jonathan, and I recently visited Seattle Children’s in April for an ophthalmology appointment.

As a parent, I was feeling very concerned about going to the hospital during this time, as my son has an ongoing health issue. When the scheduler called to reschedule his appointment, she told us that they were doing this for safety measures. I proceeded to ask her a lot of questions about safety protocols and she took the time to answer all of my questions. She didn’t rush me. I felt better after talking to her.

When we arrived at the entrance, there was a nurse that stopped us outside and asked us some questions. We got our temperature taken and were given the go ahead to go into the building.

Once inside, many people we saw were wearing masks. I immediately felt better about being in the hospital.

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Get Care When Your Child Needs It

My two-year-old son Malachi is a medically-complex Seattle Children’s kiddo and a “frequent flyer” here at the hospital. We visit the hospital often—for clinic appointments, routine procedures, sicknesses and medical emergencies. Malachi was diagnosed with Spina Bifida before he was born. He had several lifesaving operations in his first few months with us including spine and brain surgeries on his first two days of life.

Moving to get the care we needed

Malachi, his dad, and I currently live in Auburn, Wash., however we didn’t always live in Auburn. We moved from Yakima to be closer to the care Malachi needs. After two emergency air flights in two weeks just after Malachi’s first birthday, we made the decision to relocate to Auburn.

Like most parents who have medically complex kids, we were kind of pros at social distancing even before COVID-19.

As the parent of a medically complex kiddo, the current pandemic is especially concerning. We were especially cautious early this spring as news of the impact of the virus began to spread. We went into complete isolation—no one in or out of our home—on March 12. Like many parents in our situation, my husband and I were intent on doing everything possible to avoid a hospital admission. We both began working from home. We cancelled all clinic appointments and, instead, opted for telemedicine appointments with my son’s providers. Telemedicine has been so incredibly helpful for us but some things demand in-person care.

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Alyssa Tears Down the Taboo of Having Mental Health Struggles

In recognition of Mental Health Month, On the Pulse will be sharing valuable resources and inspiring patient stories each week to guide individuals and families struggling with mental health issues and help destigmatize the topic of mental health in our society.

Alyssa Scott, 17, is a senior in high school. She’s an honor student, participates in her school’s Model United Nations program and is currently taking college-level classes.

By her positive demeanor and ambitious attitude, you would think she’s just like any regular teen.

But there’s more to Alyssa than meets the eye.

Like many individuals, Alyssa lives with mental health issues.

“Even though people might not see it, I struggle every day,” Alyssa said. “Some days are worse than others, but it’s always there.”

For Alyssa, there’s been many obstacles she’s faced in life that have molded her relationship with her mental health. Yet with her strong sense of will and determination, she’s come to a point in her life where she can keep her struggles at bay.

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Tara Shares a Message of Inclusion

Tara Nadella shares her personal experience as the sibling of a patient at Seattle Children’s and explains why she approaches life with a lens of inclusion.

I’m 17 and a senior in high school. Family time is important to me, especially with my siblings! When my brother, Zain, and I spend time together, we usually listen to music or go to the movies.

Pretty ordinary sibling stuff, but what makes our story particularly unique is the fact that Zain has cerebral palsy.

Zain is 23 and has been a patient at Seattle Children’s for his entire life – so we see the hospital as a second home. We’ve spent a lot of time there, including holidays like Thanksgiving and Easter.

Last year, Zain was in the intensive care unit for his birthday, so we brought the party to him — taking turns visiting his room and singing. The staff was so gracious about everything, and we were able to bring joy to Zain even though he was in a hospital bed.

From my first taste of onion rings in the cafeteria as a child to understanding how to care for my brother today, this hospital has been a partner on our journey. All children and families deserve the exceptional care we’ve been so fortunate to receive at Seattle Children’s. Read full post »

Juvenile Arthritis Can’t Stop Izzy From Dashing Through the Snow

Seattle Children’s nurse practitioner Amber Bock (right), has been vigilant in managing her daughter Izzy’s care since she was diagnosed with arthritis at age 2.

In downtown Seattle on Dec. 8, hundreds of festive runners dressed up for the Arthritis Foundation’s annual Jingle Bell Run.

Among them was sassy 3-year-old Izzy Bock, who scampered down Fifth Avenue dressed as Cindy Lou Who from The Grinch. Onlookers would likely never have guessed this energetic child has juvenile idiopathic arthritis.

“How long had she been in pain?”

Juvenile arthritis is an autoimmune disorder causing inflammation of joints which can be associated with pain and stiffness, and can affect range of motion.

It is often challenging to diagnose juvenile arthritis in young children.

“Often, kids don’t complain of pain,” says Seattle Children’s rheumatologist Dr. Sriharsha Grevich. “They would rather focus on playing. Parents may not notice something is wrong until their child starts limping or shows other signs.”

This was the case for Izzy, whose mother, Amber Bock, is a nurse practitioner in Seattle Children’s Medically Complex Child program. When Izzy was 2 years old, she came home from daycare with a swollen ankle after tripping on a climbing structure. Amber took her daughter to an urgent care clinic, but X-rays didn’t reveal any serious injury. Read full post »