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Jul 02

Stars, Stripes and Sparks: Tips to having a fun and safe Fourth of July

fireworks.jpgFourth of July celebrations often involve cookouts, swimming, parties and parades, all topped off with fireworks!

Firework safety is always important, but it is especially important to keep a close eye on children when lighting fireworks off at home. A few tips to help you have a fun and safe Fourth of July.

Jun 19

Child Patients Save 2015 Family Advocacy Day!

More than 230 people, including 44 child patients from across the U.S. and their family members, participated this week at the 11th annual Speak Now for Kids Family Advocacy Day in Washington, D.C. Patients ranged from one-year old to 19 years old with a variety of medical conditions. Their perseverance through challenging circumstances made them heroes in our eyes.

Jun 16

2015 Family Advocacy Day Hero -- Maisy

Martindale_Maisy.jpgAfter more than 32 surgeries, including a pacemaker placement and feeding tube, Maisy still shines brightly and loves life. Born to a drug addicted birth mother who was unable to care for her, Maisy was adopted at 18 months old while she still required a ventilator to keep her alive. At only 7 years old, she has already been through skull reconstructions, open heart surgeries and many other complex surgeries that have saved her life. Today, Maisy is thriving with the help of an amazing team of doctors and the love of her adoptive family. 

Jun 15

2015 Family Advocacy Day Hero -- Noah

R_3ymBjCvna8Ofc69_Nero.Noah_photo.jpgJust a day after birth, Noah was diagnosed with hypoplastic left heart syndrome. One side of his heart didn’t function properly and after three surgeries to repair it, doctors eventually put Noah on a waiting list for a heart transplant. At 5 years old, he received a new heart, but Noah still visits his team at All Children’s Hospital Johns Hopkins Medicine for follow-up cardiac care. In addition to multiple heart check-ups throughout the year, Noah also sees a handful of specialists for his cerebral palsy, lung disease, autism, osteoporosis, physical therapy, speech therapy, behavioral therapy and other medical conditions.

Jun 13

2015 Family Advocacy Day Hero -- Lauryn

Audrict_Lauryn.jpgLauryn was born prematurely at 30 weeks and placed in the NICU for two months due to failure to thrive. She had her first seizure three days after her first birthday, but lacked a clear diagnosis even after visiting several hospitals. Lauryn endured back to back hospital stays at Children's Hospital New Orleans due to pneumonia, status epilepsy, upper respiratory infections and loss of oxygen due to seizures. She was finally diagnosed at Texas Children's Hospital with cortical dysplasia as the cause for her intractable epilepsy and developmental delay. Asthma also contributed to her frequent hospital stays and her increase in seizures. Because previous seizure treatments were not successful, Lauryn underwent a frontal and temporal lobectomy in August 2013.

Jun 12

2015 Family Advocacy Day Hero -- Max

Page.Max.jpgMax is spirited boy who loves to act, golf, play baseball, and pal around with his brother Ellison. Though born with a heart defect—Tetralogy of Fallot—and equipped with a pacemaker, Max has never let any challenge slow him down. Thanks to the great team and care provided at Children’s Hospital Los Angeles, Max is able to lead a full and vibrant life.

Jun 11

2015 Family Advocacy Day Hero -- Rene'e

Ruth.Renee_300_.jpgRene'e is a 19-year-old college student focusing on becoming a social worker for people with chronic, rare and terminal illnesses. She is also battling a number of illnesses, including mitochondrial disease, Ehlers-Danlos syndrome and dysautonomia, all while dealing with multiple organ failure, resulting in her being on a ventilator. Rene’e is using her life and personal struggles to educate and promote awareness for her illnesses. Public knowledge about any of her illnesses is very low, but she’s hoping to be a voice of change.

Jun 10

2015 Family Advocacy Day Hero -- Elliott

Perry.Elliot.JPGBorn as a 25-week preemie, Elliot weighed 1 pound, 9 ounces and was the size of a water bottle. During his four month stay at Children’s Hospital at Dartmouth-Hitchcock, Elliot underwent intestinal surgery and also received treatment for chronic lung disease, for retinopathy of prematurity and for his bilateral club feet. Still tiny and on oxygen, Elliot was discharged from the hospital after 121 days, just a few days before Thanksgiving, but he continues to go to the main hospital and to satellite locations for continued treatments and specialist visits.

Jun 09

2015 Family Advocacy Day Hero -- Cailinn

R_djc44cp2ZuBxaPb_Cailinn_School_Picture_2014.jpgWhen Cailinn was born, she was diagnosed with a rare type of unbalanced chromosomal translocation, where parts of two chromosomes—5q and 9p—swapped places in her genome. Only the third case to ever be diagnosed with this type of genetic arrangement, doctors did not expect her to live past 8 weeks of age. Now 7 years old, Cailinn has since undergone more than two dozen surgeries and procedures, and has been in the hospital for more than 400 days, most of which was in her first 3 years. Even after all of her time at the hospital, she still gets excited to go to Children’s Hospital of Wisconsin, where the staff has become like an extended family.

Jun 08

2015 Family Advocacy Day Hero -- Sean

R_dcn1rSjBLkdbiAt_sean_madden.JPGSean was born at 35 weeks gestation and, after being diagnosed with hydrocephalus and Dandy-Walker syndrome (a condition that affects brain development and movement), spent the first month of his life in the neonatal intensive care unit.

At 4 years old, he successfully completed the six week feeding day program through the feeding clinic at Mt. Washington Pediatric Hospital. His mother recalls watching through a one-way glass as Sean ate bacon, and crying in excitement because Sean was trying and liking new foods. Completing the feeding program was a turning point for Sean and his family.

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