Jul 05

Laura's Story

Our daughter, Laura, had her first myoclonic seizure at 14 months old. We were living in Germany at the time — after the first seizure, we rushed to a local hospital to get her admitted.

We soon learned that the hospital did not perform the test she needed — an EEG — during the weekend. She had seizure after seizure, nearly 100 in total, without medication while we waited for her test.

Once we were able to get her the testing she needed, our daughter was diagnosed with Angelman syndrome — a genetic disorder that leads to delayed development, severe speech impairment, and problems with moving and balance. While we had phenomenal military doctors in Germany, there was no neurologist on base. I ultimately left with our daughters to seek better treatment for Laura in the US.

Jul 02

Annalyse's Story

My daughter, Annalyse, has cerebral palsy, subglottic stenosis, tracheal bronchial malacia, metabolic bonedisease, ADHD and developmental delays. Annalyse and her twin brother, Seth, were born at 25 weeks. We became their foster parents when they were around 2 months old. We knew Annalyse would have challenges living a normal life, but we were ready to help her live her best life.

Annalyse’s medical challenges impact our family more than I realized. We don't travel often since we have to stay close to a facility that can treat her. It’s complicated to take Annalyse to typical places like the beach. She can’t participate in activities with a lot of coordination and endurance due to her bone disease. We try our best to plan trips that she can be a part of, but this has definitely limited the experiences in her brothers’ lives.

We currently travel between two hospitals to receive care, Walter Reed in Bethesda, Maryland, and Cincinnati Children's Hospital Medical Center in Ohio. My husband has to take leave from the military every time Annalyse needs care in Ohio. We plan to travel to Ohio more often in the next few months since the doctors are increasing the frequency of her medical procedures.

Jun 29

2018 Family Advocacy Day Recap

This week, nearly 50 child patients and their families made over 150 visits with members of Congress during our 14th annual Speak Now for Kids Family Advocacy Day. Some of the families most impacted by children’s health care policy shared their personal stories with lawmakers and media to emphasize the importance of investing in children’s health care.

Jun 27

Meet Maddy: 2018 Family Advocacy Day Champion!

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

From a very early age, Madison — lovingly referred to as Maddy — possessed a very strong character and brought lots of laughter and smiles not only to her household but to just about everyone she met. At the age of 3, she embarked on a life changing journey that was also beyond her years — a battle with cancer.

Maddy had been experiencing some discomfort in her right leg and stomach, and her stomach appeared to protrude. After a series of tests she was diagnosed with stage 4 high risk neuroblastoma. Further bone scans revealed that the cancer was not only in her abdomen, but also in her lower spine, her shoulders and her hips — she was given only a 30 percent chance at survival.

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.

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