Jun 26

Meet Asher and Quinn: 2018 Family Advocacy Day Champion

Asher and Quinn are participating at 2018 Speak Now for Kids Family Advocacy Day from June 26-27 in Washington, D.C. During the event, Asher and Quinn will share information about their health journey and the importance of children’s health care with members of Congress. Below is their story.

Asher has a curious mind. This 7-year-old boy does not let his medical challenges stop him from being sociable and outgoing. When he’s not conducting science experiments, you can find him with his friends on the playground or exploring the local parks.

Asher was diagnosed at birth with heterotaxy syndrome, multiple congenital heart defects, hydrocephalus, primary ciliary dyskinesia and seizure disorder. He has had extensive treatments at Maria Fareri Children’s Hospital, including open-heart surgery, 11 brain surgeries and intestinal surgery.

Jun 25

Meet Skylar: 2018 Family Advocacy Day Champion

Skylar is participating at 2018 Speak Now for Kids Family Advocacy Day from June 26-27 in Washington, D.C. During the event, Skylar will share information about her health journey and the importance of children’s health care with members of Congress. Below is her story.

Skylar is an inspiration. Her parents were once told that she would not live past her first year, but today, Skylar is a 12-year-old girl excited to journey to the nation’s capital and advocate for children’s health.

Skylar was born with bilateral open-lip schizencehpaly — a brain abnormality. She first received treatment at Arkansas Children’s Hospital when she was 3 months old. While she was initially treated for seizures resulting from her brain abnormality, she is now treated for other diagnoses that have resulted from her condition.

Jun 24

Meet Mae: 2018 Family Advocacy Day Champion

Mae is participating at 2018 Speak Now for Kids Family Advocacy Day from June 26-27 in Washington, D.C. During the event, Mae will share information about her health journey and the importance of children’s health care with members of Congress. Below is her story.

Mae is a social butterfly. She has an uplifting personality and loves to talk to everyone she meets!

You might not guess it, but this bold little girl was born with childhood interstitial lung disease and spent her first 20 months in a hospital.

Franciscan Children’s not only provided medical and respiratory care, it trained and empowered her family to manage her needs independently. Mae enjoyed occupational therapy, speech therapy and music therapy from her favorite therapists at the hospital.

Jun 23

Meet Mackenna: 2018 Speak Now for Kids Family Advocacy Day Champion

Mackenna is participating at 2018 Speak Now for Kids Family Advocacy Day from June 26-27 in Washington, D.C. During the event, Mackenna will share information about her health journey and the importance of children’s health care with members of Congress. Below is her story.

Mackenna is a pioneer. She was born with her lung and liver fused together, a condition reported only four other times in medical history. Mackenna is the only child known to have survived. But Mackenna is a remarkable young lady for many reasons beyond her health condition. She is a straight A student, an accomplished pianist and a budding rock climber.

Mackenna was first treated at UCLA Mattel Children's Hospital when she was 4 months old. She came to the children’s hospital for the highly specialized treatment she needed that could not be provided at a typical hospital. She was treated for pulmonary hypertension, which was complicated by her other medical conditions.

Jun 22

Meet Grace: 2018 Speak Now for Kids Family Advocacy Day Champion

Grace is participating at 2018 Speak Now for Kids Family Advocacy Day from June 26-27 in Washington, D.C. During the event, Grace will share information about her health journey and the importance of children’s health care with members of Congress. Below is her story.

Grace, 10 years old, is a strong-willed and determined fighter. She needed those traits to battle acute myeloid leukemia, a type of cancer that affects the blood and bone marrow.

Grace was admitted to Children’s Hospital and Medical Center almost two years ago, and it quickly became home for her and her family. The hospital team provided coordinated care to save Grace from this toxic and life-threatening disease. Grace not only received chemotherapy as an oncology patient, she also worked with the teachers at Children’s to stay on top of her education.

Jun 21

Meet Kaiden: 2018 Family Advocacy Day Champion

Kaiden is participating at 2018 Speak Now for Kids Family Advocacy Day from June 26-27 in Washington, D.C. During the event, Kaiden will share information about his health journey and the importance of children’s health care with members of Congress. Below is his story.

One word describes Kaiden: Warrior! At the ripe old age of 6 months, Kaiden (also lovingly known as Kai), has already endured emergency open-heart surgery, ECMO life support and pacemaker placement. Despite this challenging start, Kai has learned to thrive. He has an infectious smile, an easy-going personality and a joyful disposition.

Kai was born with mitral valve dysplasia and severe left atrial enlargement — congenital heart defects. Luckily, Kai has had the amazing team at Duke Children’s Hospital & Health Center by his side.

Jun 20

Meet Olivia: 2018 Family Advocacy Day Champion

Olivia is participating at 2018 Speak Now for Kids Family Advocacy Day from June 26-27 in Washington, D.C. During the event, Olivia will share information about her health journey and the importance of children’s health care with members of Congress. Below is her story.

This vibrant 7-year-old loves to dance, sing, read and cheer for her local community center. If you see how active Olivia is in her community, you would never guess that she also has sickle cell disease (SCD) and fights through pain, fatigue and swollen limbs every day.

Olivia has been a patient at Ann & Robert H. Lurie Children’s Hospital since she was 6 months old. To help manage her condition, she receives blood transfusions at the hospital at least once a month since. “This hospital has a warm and loving atmosphere which is helpful for Olivia’s healing process,” her mom says. Olivia wants to be doctor when she grows up. Her mom adds “I believe this is due to her experience in the hospital with Lurie’s amazing staff.”

Jun 19

Meet Noah and Gabriel: 2018 Family Advocacy Day Champions

Noah and Gabriel are participating at 2018 Speak Now for Kids Family Advocacy Day from June 26-27 in Washington, D.C. During the event, the twins will share information about their health journey and the importance of children’s health care with members of Congress. Below is their story.

Once you meet Noah and Gabriel Cypress, you’ll have new friends for life! Noah loves to draw, read and write. He is currently writing three books and aspires to be a motivational speaker. His brother, Gabriel, is fantastic at soccer, basketball and drawing. While Mom and Dad are proud of their passion and entrepreneurial spirit, nothing beats their admiration of the twins’ strength.

These charming 9-year-olds were diagnosed with sickle cell disease at birth. Luckily, they receive coordinated care from the hematology, pulmonology, gastroenterology and ophthalmology teams at Children’s Hospital of Richmond at VCU. The family works hand-in-hand with seven different specialists to manage the condition and its symptoms. 

Jun 18

Meet Noah: 2018 Family Advocacy Day Champion

Noah is participating at 2018 Speak Now for Kids Family Advocacy Day from June 26-27 in Washington, D.C. During the event, Noah will share information about his health journey and the importance of children’s health care with members of Congress. Below is his story.

Without a children’s hospital specialized in intricate and delicate pediatric cardiac care, Noah would not be here today. Despite discovering serious congenital heart defects during testing before Noah was even born, doctors were able to give his parents, Kristina and Rick, options that allowed him to survive and even thrive.

Noah was born with hypoplastic left heart syndrome with mitral atresia and aortic atresia. In order to treat these conditions, Noah had his first open-heart surgery when he was just 3 days old at Boston Children’s Hospital. Noah needed another heart surgery when he was 4 months old, and he will require a third surgery next summer.

Jun 17

Meet Luke: 2018 Family Advocacy Day Champion

Luke is participating at 2018 Speak Now for Kids Family Advocacy Day from June 26-27 in Washington, D.C. During the event, Luke will share information about his health journey and the importance of children’s health care with members of Congress. Below is his story.

Luke loves to watch and play football. When the University of Kentucky Wildcats are playing on television, you are sure to find him shouting “Go Big Blue!” to cheer on his favorite college football team. If you see 11-year-old Luke working hard during football practice, you would never guess that he is battling a chronic disease.

This young athlete was diagnosed with cystic fibrosis (CF), an inherited chronic disease that primarily affects his lungs and digestive system. He has had five surgical procedures, and will likely need more in the future.

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