Pages tagged "Family Advocacy Day"


Meet Ellie: 2017 Speak Now for Kids Family Advocacy Day Hero

It was during their routine 20-week ultrasound when Ellie’s parents learned of her congenital heart defect (CHD). According to her mom, Heidi, that week between the check-up and their appointment with the specialists at University of Iowa Stead Family Children’s Hospital “seemed like an eternity.”

Heidi noted that “to say we were scared is an understatement. We were in shock.”

Although Ellie was born with hypoplastic left heart syndrome, she lets nothing get in her way! At only 9 years old, she’s battled through three open-heart surgeries, ten cardiac catherizations, a feeding tube, daily medications, around 100 days in the hospital, physical and occupational therapies, and an uncountable number of echos, EKGs, labs and x-rays in her first four years of life.


Meet Kennedy: 2017 Speak Now for Kids Family Advocacy Day Hero

12-year-old Kennedy is a fighter! She fought to survive in the womb, and continued that fight while in the neonatal intensive care unit (NICU) with blood sugar levels so low her medical team prepared for the possibility of stroke. Faced with multiple negative prognoses, such as a complex chromosomal anomaly, intellectual disability and Lennox-Gastaut Syndrome (epilepsy), Children’s National Health System began Kennedy’s early intervention services at 8 months.

When her mom first met with a geneticist, she was told Kennedy was not expected to walk or talk, would be severely mentally retarded and would need to be institutionalized. Not one to be pessimistic, Kennedy’s mother TjaMeika wanted to offer her daughter every opportunity to thrive.

She still needs assistance with daily activities, such as feeding, bathing and dressing, but every milestone she has met to this date was hard fought.


Meet Benjamin: 2017 Speak Now for Kids’ Family Advocacy Day Hero

11-year-old Benjamin has been a fighter since the day he was born. From crashing at birth to where he is today, this boy has had a tremendous battle against the odds.

His parents did not know he had Down syndrome until tests confirmed it when he was just four days old. After a year of being in and out of the hospital due to his failure to thrive, Benjamin was diagnosed with Achondroplasia, also known as dwarfism. He has undergone eight brain surgeries, multiple airway and stomach surgeries, and just recently recovered from surgery on both his legs. However, despite the numerous surgeries and procedures, Benjamin has been a “warrior” through it all.


Meet Jude: 2017 Speak Now For Kids' Family Advocacy Day Hero

Jude’s medical journey started shortly after birth when his mother kept noticing small birthmarks appearing on him. After his pediatrician recommended Jude see a geneticist at the Children’s Hospital of Colorado, he was diagnosed with neurofibromatosis (NF), a genetic disease that affects the central nervous system and causes tumors to grow in and on the body.

NF affects all children differently. For 6-year-old Jude, its effects have been profound and included being diagnosed with epilepsy and a rare and progressive cerebro-vascular disease called moyamoya when he was 3 years old. To help reduce his risk of stroke from the moyamoya, Jude had a craniotomy and brain surgery almost three years ago and continues to get regular MRIs. In August of 2016, an MRI helped doctors find a small tumor on his brain stem called a tectal glioma.


Medicaid Matters for Kids Mondays -- Madeline and Camille

Every Monday Speak Now for Kids is celebrating Medicaid Matters for Kids Mondays with posts highlighting the importance of Medicaid in children’s access to health care. This week we hear from Lori, the mother of Madeline and Camille, who represented Norton Children's Hospital at the 2010 Speak Now for Kids’ Family Advocacy Day.


Madeline and Camille are happy, healthy young ladies who are thriving—both physically and academically—but this wasn’t always the case.

Diagnosed with tethered cord syndrome, a rare neurological disorder that limits the movement of the spinal cord within the spinal column, both girls have undergone delicate spinal cord surgeries to alleviate bladder and bowel problems; pain and tingling in their legs and feet; severe headaches; extreme fatigue; toe walking; and problems with basic motor skills. The family is extremely grateful to their surgeon Tom Moriarty, MD and Norton Children’s Hospital in Louisville, KY.


Medicaid Matter for Kids Mondays -- Dacey

Every Monday Speak Now for Kids is celebrating Medicaid Matters for Kids Mondays with posts highlighting the importance of Medicaid in children’s access to health care. This week we revisit Dacey, a Speak Now for Kids’ Family Advocacy Day alum and current patient at the The Children’s Hospital of San Antonio.


Dacey_Patrick.jpgWe first met Dacey nearly 18-months ago when she represented The Children's Hospital of San Antonio at the 2015 Speak Now for Kids Family Advocacy Day. Despite her medical challenges, Dacey is thriving. Her most recent surgery, which focused on her scoliosis, involved the insertion of a MAGEC (Magnetic Expansion Control) rod, allowing surgeons to straighten and correct the spine gradually and noninvasively through an external remote control system.


What Life is Like for Twins Living with Cystic Fibrosis

After spending the afternoon swimming with friends, 10-year-old twins Berne and Maren arrived home, and their mom, Stacy Van Gorp, immediately handed them generous helpings of Chex Mix. “We have to make sure they get enough calories,” she says, “especially after exercise.” Both children have cystic fibrosis.

Throughout her pregnancy, Van Gorp says everything progressed normally until both kids stopped moving at 32 weeks due to bowel obstructions. After visiting her doctor, she was referred to the University of Iowa Children’s Hospitalin Iowa City where a medical team tried to prolong the pregnancy long enough to help the kids’ lungs develop further.

Despite this, the twins were born just after midnight: Maren one minute older than Berne. Berne immediately had surgery to remove part of his bowel and Maren had a similar surgery a few days later. Berne was in the NICU for 58 days and Maren for 63. 


No Way is She Letting Sickle Cell Slow Her Down

To help Speak Now for Kids recognize Sickle Cell Awareness Month, we have Dayton, Ohio’s own Awo.

We met Awo when she represented Dayton Children’s Hospital at the 2014 Speak Now for Kids. As a child living with a complex medical issue, Awo is one of the estimated 3 million children who could ultimately benefit from the Advancing Care for Exceptional Kids Act (ACE Kids Act).


Advocating For Kids Like Me

Taniah represented Lurie Children’s on Captiol Hill as part of Children’s Hospital Association’s initiative Speak Now For Kids. This year she participated in the Speak Now for Kids Family Advocacy Day to advocate for children’s health and urge members of Congress to pass the ACE Kids Act, a proposal to improve how care is delivered to children with complex medical conditions on Medicaid.



KAP_2016__Family_Advocacy_Day_-053.jpgMy name is Taniah Smith and I’m 8 years old but I’m one month away from being 9. I’m a 3rd grader who loves to have playdates with my friends. We like to sing and dance together and make music videos.


Teens Provide Perspective on Hospital Experience

This originally appeared in a recent issue of Children's Hospitals Today


This teen advisory council provides a viewpoint on hospital life from older patients.

By Kaitie Marolf

2016_Speak_Now_for_Kids_Family_Advocacy_Day__June_22__2016-135.jpgThe parents at 2016 Speak Now for Kids Family Advocacy Day (FAD) were curious about the group of teenagers who had come to the event without parents. A 6-year-old and her mother approached 17-year-old Capri Reese from Levine Children’s Hospital in Charlotte, North Carolina. The girl’s mom explained that, like Reese, her daughter had sickle cell anemia and wanted to meet her because of her evident happiness and successes despite her medical challenges. “To know I have that kind of impact on someone was inspiring,” Reese says. “I never viewed myself that way. I thought I was just another person dealing with something. To see that little girl thought it was so much more made the moment stand out to me.”

Reese and three other members of the Levine Children’s Hospital Teen Advisory Council attended FAD with Heather Silva, the child life and creative arts manager at Levine, and Mike Daly, Levine’s family centered care coordinator. The council members were among the oldest patient attendees. Daly and Silva say watching the council members share their stories with their legislators on Capitol Hill, interact with younger children and talk with parents confirmed the success of their two and a half year venture with the council. Silva also says that attending the visits independently impacted how the teens spoke to the legislators. “They were able to be honest whereas teens sometimes don’t want to talk in front of their parents. They don’t want to upset them or hurt their feelings,” she says. “These teens could speak from their hearts.”


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