Pages tagged "Family Advocacy Day"


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

When he was 3 years old, Stephen was diagnosed with isovaleric acidemia (IVA), a very rare genetic disease. Unfortunately, the late diagnosis left him in a coma and on life support. As a result, he suffered a traumatic brain injury resulting in severe intellectual and developmental disabilities and complex health issues.

“We were devastated with his diagnosis of a rare disease and the brain injury,” recalls Stephen’s mother, Jane. “How he was diagnosed was both traumatic and heartbreaking knowing that we lost a huge part of Stephen.”


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

Nyasia was just 4 years old when her mother, Yolanda, received an urgent call from her day care. She was vomiting, lethargic and pale. Yolanda immediately took her daughter to Connecticut Children’s Hospital. There, she was diagnosed with pulmonary capillaritis — an inflammatory condition that causes the destruction of the tiny blood vessels that surround the air sacs, called capillaries. Symptoms can include anemia, shortness of breath or even sluggishness.

Talking about that day, Yolanda describes how scary it was, “my baby was suffering; hooked up to IV’s and different doctors were trying to explain what was happening.” Doctors did not believe Nyasia would survive six more months. “It was at that moment I died inside.”


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

Brody was born with an abdominal wall defect called an omphalocele, a condition that only happens in one of every 10,000 children and causes many of his organs to be outside his body in a protective sack. He spent the first 7.5 months of his life at Boston Children’s Hospital (BCH) where he underwent a complicated procedure to put his organs inside of his body. Due to this birth defect, Brody still has some cardiac and respiratory issues.

“We didn't know about Brody's heart and lung conditions while I was pregnant,” explained Brody’s mom, Maureen. “This was all discovered after Brody was born.”


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

Simone was a fighter in every sense of the word during her almost-two-month NICU stay. Despite multiple surgeries for her congenital diaphragmatic hernia (CDH), she bounced back stronger every time. Simone’s mother, Antoinette, described the first year after her birth as “definitely a challenge.” Since then, she has grown into a social, loving and brilliant young lady.

A fantastic student who receives great grades, Simone never ceases to amaze her family, friends and teachers with her resiliency and strength of mind and heart. Not one to sit still for too long, Simone is an active member of Girls Who Code — a programming club for girls — and her middle school newspaper. She enjoys drawing, jewelry making, crocheting and sewing. Simone also enjoys Taekwondo and has progressed all the way to Red-Black belt — just one belt away from Black belt!


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

At just 7 years old, Madison was diagnosed with a pediatric tumor referred to as a craniopharyngioma, and panhypopituitarism. However, that hasn’t stopped her from taking on the responsibility to live her life.

In many ways, she has had to grow up faster than other kids. Her self-care alone is admirable. For example, she doses out more than 50 pills for herself each day. She administers her own growth hormone injections daily. While in Philadelphia for treatment, Madison, unlike many other children, didn’t want to be sedated for her radiation therapy. Instead she chose to lay completely still in the radiation machine each day. Because of this, she waited for the treatments in the 'adult waiting area.' While there, she enjoyed making friends with all of the other adults who were also waiting for their daily radiation treatments, but she didn’t stop there. Madison made friends with the staff of the clinic and the parking garage attendants, as well.


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

Bridget was born eight weeks premature with many birth defects. She had her first of over 25 surgeries at 3-days-old and soon after was diagnosed with CHARGE syndrome — an extremely complicated set of genetic abnormalities. Bridget remained in the NICU for almost six months before coming home in October of 2006.

According to Josh, Bridget’s father, “the first couple of years were a blur where most of our focus was on Bridget becoming medically stable.”


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

Excerpted from Lurie Children’s Blog

Jamela, 6, loves singing, dancing, and eating ice cream sandwiches. “She can make anyone smile and is always happy. She’s got quite the outgoing personality,” says Tangela, Jamela’s mom. When Jamela didn’t stop complaining about constant leg pain, Tangela knew something wasn’t right. “I took her to the pediatrician, to a near-by emergency room, and each time they told me maybe she’s just sore from ballet, it’s behavioral or it’s growing pains,” says Tangela. Something was telling Tangela that it wasn’t just soreness from Jamela’s dancing. She persisted to find answers.

Easter Sunday 2016, while at her grandmother’s house, Jamela’s leg pain became increasingly worse. Tangela brought her to Rush University’s Emergency Room. An ultrasound was performed and blood work taken and results found nothing out of the ordinary.


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

Major was only 7 days old when his parents learned of his cystic fibrosis (CF) diagnosis.

“Finding out that Major has CF was the hardest day of our lives,” said his mother, Jaclyn.


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

Caroline was diagnosed with the rare genetic disease Isovaleric Acidemia before birth and that diagnosis was confirmed shortly after at Children’s National Health System. Her early diagnosis came thanks to the knowledge learned from her big brother’s delayed diagnosis, which was too late to prevent a devastating brain injury.

Her early diagnosis has enabled the medical experts in the genetics division to carefully manage her rare disorder enabling her to live a normal, healthy life.


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

Tymia was born with Sickle Cell Disease (SCD), a condition that causes deformed red blood cells. SCD is associated with a number of complications, including unbearable pain. The health crises caused by SCD require a lot of attention, and they have taken away Tymia’s ability to use her hands and feet at times. While there is no cure, Tymia and other SCD patients require frequent medical treatment. Tymia has been hospitalized over 48 times and has endured 44 blood transfusions to help save her life.

“Tymia has Type SS, which is the worst kind of Sickle Cell. But, like all of the types, it affects everyone who has it differently. For her it has been a battle,” explained Tymia’s mother, Susie.

Despite the challenges of living with SCD, Tymia is a brave and ambitious 11-year-old. Her health care providers at the MUSC Children’s have gone above and beyond to make sure that she feels comfortable and supported.


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