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.

Jun 16

Meet Gabe: 2018 Family Advocacy Day Champion

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

Gabe is wise beyond his years. His parents and friends describe him as an “old soul,” and not at all like a typical teenager; that, his parents say, is what makes him special.

Before he had time to grow into the thoughtful young man he is today, Gabe received nearly 50 medical procedures, including two open-heart surgeries, to treat double outlet right ventricle and hypoplastic left ventricle — congenital heart defects. Gabe would not be here today without specialized medical intervention, his condition would have been fatal.

Jun 15

Meet Tenley: 2018 Family Advocacy Day Champion

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

Tenley loves to smile, dance and clap. You might never know that this happy 2-year-old has had two open heart surgeries in the first four months of her life. When her mom was just 20 weeks pregnant, Tenley was diagnosed with hypoplastic left heart syndrome, a birth defect that affects blood flow through the heart.

Before her second surgery, Tenley went into cardiac arrest and was put on cardiac and respiratory support. Her parents worried that her conditions may not improve. But the staff at Texas Children’s Hospital did not give up on Tenley.

Jun 14

Meet Naomi: 2018 Family Advocacy Day Champion

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

Naomi is a social butterfly. She adores people, and makes new friends everywhere she goes. When she isn’t meeting new people, she enjoys riding her adaptive tricycle, coloring and playing board games. But while 9-year-old Naomi is now happy and social, she was once in a coma and vegetative state for 44 days due to an arteriovenous malformation (AVM) rupture in her brain.

Naomi received excellent, and extensive, treatment at Advocate Children’s Hospital — she was treated for six weeks in the pediatric ICU. During that time, she had multiple brain surgeries, a tracheal tube placement and a g-tube placement. She then spent over six months in pediatric in-patient care, and has since spent over a year receiving out-patient therapy.

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