May 09

Meet Javi: 2019 Family Advocacy Day Champion

Meet Javi is participating at 2019 Speak Now for Kids Family Advocacy Day from June 25-26 in Washington, D.C. During the event, Javi will share information about her health journey and the importance of children’s health care with members of Congress. Below is her story.

Javi is a proud Husky at the University of Washington and she loves going to work at REI! If you saw Javi walking around campus today, you might never know that she has spent over 600 days in various hospitals.

Now 21, Javi was diagnosed with general anxiety disorder and high-functioning autism at the age of 14. Even though Javi thought that she would be in inpatient mental health facilities for the rest of her life, she persisted thanks to her supportive family and the Psychiatry and Behavioral Medicine Unit at Seattle Children’s Hospital.

May 08

Meet Courtney: 2019 Family Advocacy Day Champion

Courtney is participating at 2019 Speak Now for Kids Family Advocacy Day from June 25-26 in Washington, D.C. During the event, Courtney will share information about her health journey and the importance of children’s health care with members of Congress. Below is her story.

Courtney loves playing volleyball, basketball and taking pictures. But these activities wouldn’t be possible without the expert care at Cincinnati Children’s Hospital. At 11, Courtney was diagnosed with juvenile arthritis, myasthenia gravis, Cushing’s syndrome and coronary heart disease—but she doesn’t let any of her medical conditions define who she is.

Courtney relies on 15 specialists and looks forward to visiting her rheumatologist, Dr. Brunner, the most. Courtney feels comfortable talking to her—they joke and tell stories to each other which makes visits so much more fun! She tells everyone that Dr. Brunner saved her life when she diagnosed her heart condition and myasthenia gravis.

May 07

Meet Jack: 2019 Family Advocacy Day Champion

Jack is participating at 2019 Speak Now for Kids Family Advocacy Day from June 25-26 in Washington, D.C. During the event, Jack will share information about his health journey and the importance of children’s health care with members of Congress. Below is his story.

Jack has a passion for medicine and science and he’s always eager to learn! You won’t find him playing video games like other kids his age. Instead, this curious 15-year-old likes to watch videos related to what he’s learning in school.

Since Jack has such a positive outlook on life, it’s hard to believe that he was diagnosed with leukemia three years ago. He dealt with the side effects of chemotherapy optimistically, especially during the first year of treatment at Joe DiMaggio Children’s Hospital. Because Jack is very sensitive to chemotherapy, the care team at Joe DiMaggio went the extra mile to consult other pediatric oncologists across the country to avoid relapse.

May 06

Meet Abel: 2019 Family Advocacy Day Champion

Abel is participating at 2019 Speak Now for Kids Family Advocacy Day from June 25-26 in Washington, D.C. During the event, Abel will share information about his health journey and the importance of children’s health care with members of Congress. Below is his story.

At age 2, Abel has given life more meaning than most people get to experience—he’s a fighter. Abel was diagnosed with congenital diaphragmatic hernia and a rare genetic disorder called Corenilia de Lange syndrome. He was critically ill for the first six months of his life—his parents wondered if he could ever come home.

Through multiple surgeries, countless interventions and life-saving moments from over 10 specialists, he fought with every ounce of his being!  Abel is known as the “medical miracle who moves mountains” because he finally graduated from the Medical Surgery Intensive Care Unit (MSICU) after 323 days at Boston Children’s Hospital.

Without the methodical and innovative approach of his care team, Abel’s odds of survival would be very slim. Dr. Terry Buchmiller was Abel’s primary surgeon and her operating hands are priceless to Abel and his family. Abel was less than a week old when Dr. Buchmiller first saved his life, and she continues to save his life over and over again.

May 01

FAD Alum Newsletter -- Advocacy Continues

Charlie is a 3-year-old little boy filled with endless amounts of energy, laughter and silly comments. Under his sweet smile, he holds a long list of diagnoses and requires eight specialists for his conditions.

At two months old, Charlie was diagnosed with two congenital heart conditions—mitral stenosis and mitral regurgitation—and pulmonary hypertension, a type of high blood pressure that affects the arteries to the lungs and the right side of the heart. Within four months, Charlie had three unscheduled open-heart surgeries at Children’s Minnesota to repair, replace and fix his mitral valve. The surgeries he received at Children’s Minnesota saved his life.

Apr 22

Jacob's Story: Month of the Military Child

In honor of Month of the Military Child, we spoke with Jacob’s mom, Holly. Jacob has complex medical conditions, and getting him the care he needs can sometimes be difficult for this military family.   

 

As I shared with the Speak Now for Kids community last year, my youngest child, Jacob, began having ‘infantile spasms’, a rare seizure condition, that presented as full-body ‘jack knife’ motions five years ago. Our journey into the world of complex medical care began that day, and it has never been an easy one. Jacob has severe brain damage, cannot walk without assistance, uses a wheelchair, has complex communication needs—and the list goes on.  

 

Last year, I talked about how we got a diagnosis for Jacob, described some of the unique problems that can face military families like ours, and gave some tips I hoped were helpful for other families out there. This year, as I sit down to write, I want to illustrate one of these unique issues in more detail. It’s a topic we’ve been spending a lot of time on lately—securing the equipment Jacob needs just to live comfortably and safely in our home.  

Apr 01

Medicaid Matter for Kids Monday - Vika

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 spoke with Vika’s mom, Ashlee.

Vika was born with TAR Syndrome and faces challenges every day enduring life with a chronic condition. We adopted Vika from the Republic of Georgia almost a year ago and we’re excited for the care that she can receive in the United States; she’s currently under great care at Penn State Hershey Children’s Hospital. She relies on multiple specialists, including hematologists, orthodontists and endocrinologists.

I was nervous to apply for Medicaid after we adopted Vika. I felt like I was cheating the system because we agreed that we could afford Vika’s care when we signed her adoption paperwork. Fortunately, I had a job that had medical insurance benefits, but they did not cover all her expenses. Medicaid has been very beneficial to Vika. Even with private insurance, her care wasn’t completely covered—we have paid thousands of dollars. For instance, children with TAR syndrome can have congenital heart problems so it was recommended that she have a “simple” echocardiogram to check. After primary insurance, we still owed over $1,000 just for this one test.

Mar 30

Happy Doctor's Day!

We’re especially grateful for the brilliant and selfless doctors working every day at the children’s hospitals across the nation. In recognition of Doctor’s Day, our Speak Now for Kids families shared their thank-you messages to their talented doctors.

Mar 29

Meet Laura: Certified Child Life Specialist

Speak Now for Kids honors child life professionals who are dedicated to helping children with difficult health circumstances. The following testimonial is courtesy of the Association of Child Life Professionals (ACLP).

Laura Mitchell, BS, CCLS, is a child life specialist at Nemours A.I. duPont Hospital for Children in Wilmington, Delaware. Laura works with a multidisciplinary health care team to facilitate procedures requiring sedation and increase coping and patient and family satisfaction. She also aims to decrease stress, anxiety, pain and other negative feelings or effects related to the hospital experience.

Laura believes that facilitating coping skills should be an integral part of all procedures, not just those requiring sedation. She and her team incorporate a structured, individualized approach to sedation and use both pharmacological and non-pharmacological methods to ensure that procedures are completed safely with minimal pain and anxiety. Some patients may only require pre-procedural preparation before induction while others may benefit from education, play and procedural support.

Mar 28

Happy 2nd Birthday, Elijah!

We learned our son, Elijah, was diagnosed with Trisomy 18 (T18) prenatally. Our doctor explained "what it all means," then handed several sheets of printed paperwork on T18. Every doctor said the same thing, "there's very little, if any, life expectancy for T18 babies." They even discouraged us from learning about the condition ourselves. And with no knowledge of T18, we went to Google and the search results were horrific. We felt hopeless, frustrated and angry.

Elijah was born on March 28, 2017 with full T18, a genetic condition where he has an extra chromosome in every cell of the body. We were told to enjoy our limited time with Elijah as he would probably die soon. We did not receive routine newborn care; instead, we met the bereavement team, palliative doctors and hospice staff. There are many challenges to care for Elijah, mainly because questions regarding his care have limited answers. We still experience challenges caring for Elijah now, but we are not afraid to seek answers. We're not afraid to find a physician who knows. We're not afraid to walk away from a physician who doesn't know.

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