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Jul 24

Living with Juvenile Arthritis

Meg_W_Blog_2.pngJuly is Juvenile Arthritis Awareness Month. We asked Meghan Winkleman, an adult living with Juvenile Rheumatoid Arthritis, to share her experience with the Speak Now for Kids community.

Science has found the earliest we can recall memories is around 3½ years old. I was diagnosed with Juvenile Rheumatoid Arthritis (JRA) at 2 ½. I literally do not know a time in my life that I haven’t had arthritis. I was two when my parents first started seeing signs that something was not right with their toddler. I would wake up in the morning unable to walk but by the time we got to the doctor’s appointment a few hours later I would be running around like a normal two year old. The doctors probably thought my mom was being a crazy first time mom but she was persistent and after about six months a diagnosis was finally made.

Jul 22

A Parent’s View: The Importance of Children’s Hospitals

10370420_799767777399_4866938761443528178_n.jpgThe first time Boston Children’s Hospital saved my son’s life, he was 21 hours old. It wasn’t a surprise -- Joey had been diagnosed in utero with both a ventricular septal defect (VSD), a hole between the right and left sides of his heart, and a duodenal stenosis, where a portion of the intestine is so constricted that very little can pass through, by doctors in the Advanced Fetal Care Center. Upon birth, it was obvious that the latter issue would take precedence, and Dr. Smithers worked his magic in almost six hours. The second time came less than a month later, when his VSD and another heart defect -- an atrial septal defect (ASD), or a hole in the upper part of his heart-were repaired by the amazing Dr. Pigula.

Jul 15

Join Us to Learn More about CHIP

The Children’s Hospital Association will be participating in a “#WellnessWed” Twitter Chat under @speaknowforkids on Wednesday, July 23rd at 2:00 p.m. EDT

Jun 25

Family Advocacy Day Dinner Featured on Local Fox 5 News


Tuesday night's Family Advocacy Day Patriotic Dinner and Celebration was an exciting night for super heroes -- big and small. Lauren DeMarco of Washington D.C.'s Fox 5 News was on hand to catch it all. 

Jun 25

Family Advocacy Day Hero -- Meet Zoey K.

ZoeyK.jpgZoey Nidhi K., Age 2
Hometown: Houston, TX
Hospital: Texas Children’s Hospital, Houston, TX

Less than a year ago, Zoey, who hails from Mumbai, India, was brought home to the United States. At 2 years old, she was just 25” tall, weighed 16 pounds and was below the 3rd percentile of height and weight for girls with achondroplasia, a form of dwarfism. After getting through some of her initial exams, Zoey has been able to avoid the need for any surgery to correct hearing loss or apnea, two common side-effects of achondroplasia. While her skeletal system seems to be intact currently, she is expected to require some level of orthopedic care in the future.

Jun 24

Family Advocacy Day Hero -- Meet William K.

WilliamK.jpgWilliam Ri Jin K., Age: 4
Hometown: Houston, TX
Hospital: Texas Children’s Hospital, Houston, TX

William was born and left in the emergency room at the local hospital in Hohhot, Inner Mongolia, People’s Republic of China, at just a day old. Not only was Will left weak and emaciated, he was also born with achondroplasia, a type of dwarfism that will likely require a number of surgical procedures throughout his life. In addition to orthopedic surgeries, Will has already faced — and successfully emerged from — surgery to remedy his hearing and significantly reduce his obstructive sleep apnea. He receives treatment by orthopedic and genetic specialists at Alfred I. Dupont Hospital for Children in Delaware and a variety of pediatric specialists in his new hometown at Texas Children’s Hospital in Houston. 

Jun 22

Family Advocacy Day Hero -- Meet Brandon W.

Brandon W., age 17 
Hometown: Burnsville, MN
Hospital: Gillette Children’s Specialty Healthcare, St. Paul, MN

To meet Brandon is to experience the strength and indomitable spirit of a teen who has defied the odds, overcoming more medical struggles than most adults.

Jun 21

Family Advocacy Day Hero -- Meet Madelyne W.

Madelyne W., Age 9 MadelyneW.jpg
Hometown: Kent, OH
Hospital: Akron Children’s Hospital, Akron OH

Born prematurely at only 26 weeks gestation, Madelyne spent three months in the neonatal intensive care unit at Akron Children’s Hospital. Having been hospitalized more than twenty times, Madelyn continues as a patient there, receiving treatment for her cerebral palsy, asthma, obstructive sleep apnea and chronic pulmonary issues. 

Jun 20

Family Advocacy Day Hero -- Meet Bryce W.

Bryce W., Age 9 BryceW.jpg
Hometown: Brooklandville, MD
Hospital: Mt. Washington Pediatric Hospital, Baltimore MD

Bryce, born prematurely at 24 weeks gestation, has cerebral palsy and has been in physical, occupational, and speech therapy since age 1. Bryce also has had several series of Botox injections and serial castings to help improve his flexibility and range of motion. Last summer, Bryce spent two weeks at Mt. Washington Pediatric Hospital where he received exceptional rehabilitation care after having a cord lengthening procedure on both of his legs.

Jun 19

Family Advocacy Day First Person -- Brandon's Story

‘Never Give Up, Never Back Down, and Never Lose Faith’   Brandon

By Sheri Wittrock

Our son Brandon, now 17, was born at just 25 weeks gestation and weighed only 1 pound, 13 ounces. As Brandon struggled with multiple health issues, including cerebral palsy (a movement disorder that results from brain damage at birth) and hydrocephalus (excess fluid on the brain), we struggled to get the answers we needed. We were suddenly faced with questions, fears and lifestyle changes we had never anticipated. For instance, one doctor told me that if I didn’t stay home with Brandon (I was employed full-time prior to his birth) he would likely pass away.

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