Jun 25

Update on Jakob

JakobUpdate1.PNGJakob was born with an extremely rare genetic disease called microvillus inclusion disease—essentially, his intestines fail to absorb nutrients. 

At 2019 Speak Now for Kids Family Advocacy Day, Jakob and his family advocated on behalf of kids like him and the care he receives from C.S. Mott Children's Hospital

Below is an update from his mom.

Fortunately, Jakob hasn't had major medical issues develop this year! We continue to have a combination of private insurance and Medicaid to cover his health care needs.

Jun 19

Living with Sickle Cell Disease

While June 19 is World Sickle Cell Day, Capri lives with sickle cell disease (SCD) every day. In 2016, she advocated for youth like her by representing Levine Children’s Hospital at Speak Now for Kids Family Advocacy Day. Below is an update from Capri.

Capri-1.jpgIn 2017, I graduated high school and went to college at North Carolina Agricultural and Technical State University to study nursing. I’m currently a rising senior and have had so many great experiences in college. My passion for nursing has grown tremendously as I matriculate through my program. I’ve maintained my honors status in college, so I guess I can say I have excelled. I was recently elected as president of the nursing student association chapter at my school, and I look forward to serving the nursing community this fall.

Sickle cell disease predominantly affects minorities. I feel it’s not highlighted as much as it should be to the world. While I feel more people are aware of SCD, there is always room for improvement.

Jun 15

Celebrating Gerard’s Life

GerardSeniorPic.jpgOur community of child health advocates celebrates the life of Gerard, an ambassador who participated at 2016 Speak Now for Kids Family Advocacy Day. Gerard joined three other teenage patients representing Levine Children’s Hospital to work the halls of Capitol Hill in Washington, D.C. 

It is with a heavy heart we share the news of Gerard’s passing after a lengthy illness. Below is a tribute to Gerard’s life and his incredible impact on others.

Gerard, an advocate for those like him with sickle cell disease (SCD), was dedicated toward increasing awareness about SCD and ensuring children’s hospitals considered the needs of teens. He received excellent care at Levine Children’s Hospital.

Jun 07

Update on Natalia

NataliaUpdate.jpgWhen she was eight years old, Natalia was diagnosed with Ewing’s sarcoma—a rare form of bone cancer. At 2017 Speak Now for Kids Family Advocacy Day, Natalia advocated on behalf of kids like her and the care she receives from St. Joseph's Children's Hospital of Tampa.

Below is an update from her mom in honor of National Cancer Survivors Day, June 7.

Natalia had another surgery last year to correct a leg discrepancy that resulted from chemotherapy and radiation treatment. Thankfully, Medicaid covers 100% of her careincluding all medications!

Jun 04

Raising My “Little Girl”

Blittle_-_Copy.jpgMy “little girl” is nearly 20 years old now.

If you know anything about me, then you know about my little girl, Breanna. You would know that she is the one that made me a mommy. When all the world was prepping for Y2K and the end of days leading up to the year 2000, I was debating what to call the child that grew in my womb.

Breanna introduced me to the world of disabilities because I previously only knew by privilege. She set my soul on the path to becoming a better mom and ultimately a better person. You know, it isn’t until we determine as people to look outside of ourselves and into the eyes of others that we can actually learn the world is much bigger than the box we grew up in.

May 26

Update on Elyse

Shortly after birth, Elyse was diagnosed with chronic intestinal pseudo-obstruction. At 2019 Speak Now for Kids Family Advocacy Day, Elyse advocated on behalf of kids like her and the care she receives from UCLA Mattel Children's HospitalBelow is an update from her mom.

elyse_hospital.jpgLast August during the first week of the 2019-2020 school year, Elyse was admitted to the hospital for about a week due to complications with her central line. Elyse takes her academics very seriously, and she absolutely hates to miss a day of school.

She also missed another week of school in January 2020 due to a line infection. Elyse recently had major abdominal surgery to relocate an ostomy that was not functioning ideally and to resection some of her bowel.

The surgery was successful, and Elyse is on the road to recovery. She wasn't nervous about the surgery. Instead, Elyse was more concerned with falling behind with her online schoolwork!

May 21

Addressing the Pediatric Mental Health Crisis

Experts are unsure why pediatric mental health conditions are spiking, but increased awareness and treatment options are bringing new hope to patients and their families.

From the outside, everything in Julia Paxton’s world looked perfect. She had warm, loving parents, plenty of friends, was active in student government at her Mount Vernon high school and was a trusted local babysitter.

Nationwide-2.PNG“But on the inside, I was dying,” she says now. Hiding in her room at home in Howard, Ohio, northeast of Columbus, she would cut herself to relieve her anxiety. She imagined what it would be like to kill herself to halt the constant drumbeat of anguish that had become her life.

May 19

Update on Donovan

Donovan_photo2.pngAt 2018 Speak Now for Kids Family Advocacy Day, Donovan advocated on behalf of kids like him and the care he receives from Akron Children's Hospital. Below is an update from his parents, Kevin and Lisa.

Donovan is in good health and continuing to thrive. Since participating at Family Advocacy Day, he returned to the soccer field for two successful seasons. Donovan completed the 4th grade with straight A's, and he switched to a new school for 5th grade where he continues to make mostly A's. 

May 15

Grateful for Our Nurses

CHOC_Patterson-Melanie.jpgTo honor nurses who are on the front lines of providing care during the COVID-19 pandemic, National Nurses Week (May 6-12) was extended to recognize National Nurses Month for May 2020.

Below is a testimonial from Melanie Patterson, DNP, MHA, RN, vice president of patient care services and chief nursing officer at CHOC Children's.   

I am honored to lead a team of nurses who demonstrate—every day—an extraordinary commitment to the highest standards of care. That dedication hasn’t wavered in the slightest during the pandemic. 

From supporting our command center operations to staffing a 24/7 COVID-19 helpline for our community, our nurses have enthusiastically accepted new roles and responsibilities to ensure we continue to advance the health and well-being of the children who depend on us. 

May 11

Recognizing Children's Hospital Nurses - Marianne's Story

Editor's Note: For National Nurses Week (May 6-12), we recognize the incredible dedication of nurses across the country--especially those providing care to our most vulnerable in children's hospitals. Below is an update from Marianne Hatfield, Vice President of Yale New Haven Children's Hospital & Yale New Haven Hospital Women's Services.

YNNH-COVID.PNGAs COVID-19 has not affected the pediatric population in the same way as it has affected the adult population, our pediatric services have seen a steep decline in in-person clinic and emergency department visits. We have had the same ban on elective procedures as our adult counterparts leading to a significantly decreased census in our inpatient and pediatric ICU units--with the exception of our neonatal intensive care units which have maintained their normal volume of patients.

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