Jul 27

What's Up Wednesday -- Anna-Maria

KAP_CHA_Advocacy_Dinner_2016-042.jpg#WhatsUpWednesday is our chance to hear from the teens who are involved with the Speak Now for Kids community. This week’s post will focus on Anna-Maria, a recent Speak Now for Kids Family Advocacy Day Hero. Anna-Maria was diagnosed eight years ago with a low-grade brain tumor of the hypothalamus and optic pathways that caused hydrocephalus. Currently in treatment, and followed closely by multiple highly specialized physicians at Kosair Children's Hospital, Anna-Maria attends high school and is actively involved with her swim team and youth group.

So Anna-Maria…what’s up?

Jul 20

What's Up Wednesday -- Christian

#WhatsUpWednesday is our chance to hear from the teens who are involved with the Speak Now for Kids community. This week’s post will focus on Chrtistian, a recent Speak Now for Kids Family Advocacy Day Hero. Christian was born missing half of his brain. When he was 10-months-old, Christian was diagnosed with cerebral palsy, hydrocephly and quadriplegia. Since then he has been receiving treatment at Children’s Specialized Hospital in New Jersey.

So Christian…what’s up?

Jul 13

What's Up Wednesday -- Capri

Capri_1.jpg#WhatsUpWednesday is our chance to hear from the teens who are involved with the Speak Now for Kids community. This week’s post will focus on Capri, a recent Speak Now for Kids Family Advocacy Day Hero. When she was just 13 days old, Capri was diagnosed with sickle cell anemia. As a member of the Teen Advisory Council at Levine Children’s Hospital she feels strongly that it is important to educate those around her about what it’s like having asthma and sickle cell anemia.

So Capri….what’s up?

Jul 06

What's Up Wednesday -- Grant

#WhatsUpWednesday is our chance to hear from the teens who are involved with the Speak Now for Kids community. This week’s post will focus on Grant, a recent Speak Now for Kids Family Advocacy Day Hero. At 11 years old, Grant was diagnosed with medulloblastoma, the most common pediatric type of malignant brain cancer. Thanks in part to the medical team at Nationwide Children’s, 16-year-old Grant is now tumor free.

So, Grant…what’s up?

Jul 01

Kids Get Arthritis, Too

Nikki, mom of 2016 Speak Now for Kids Family Advocacy Day Hero, Peyton, shares what it was like when a simple fall turned into a diagnosis of juvenile rheumatoid arthritis (JRA). Read Peyton’s original post here: http://bit.ly/1TFaEFa


rsz_akron_childrens_hospital_domers_peyton_photo.jpgIt began with a typical fall of a toddler. She fell at a relative’s house and didn’t even really hit her knee. After a forty minute car ride home, she couldn’t walk. Peyton cried when she tried to put weight on her right leg and could barely move it. The swelling – it was unreal. It was like someone had stuffed a small orange in her knee. Off to the emergency room we went.

The physician came in and explained it was probably a bad sprain and that her x-rays were clear. But we needed to follow up with orthopedics at Akron Children’s Hospital if it didn’t start getting better within a week. We saw an orthopedist twice that same week due to her pain, continued swelling, lack of movement, and most concerning – her inability to walk much. They went over her x-rays and took blood to look for bacterial infections and Lyme disease which all came back negative.

Jul 01

2016 Speak Now For Kids Family Advocacy Day Hero: Kaleb

rsz_kap_cha_advocacy_dinner_2016-022.jpgAt their 18-week OB appointment, Kaleb’s parents learned that their baby boy had challenges. They were told that his heart was not developing correctly, and he was going to need numerous surgeries to repair his cardiovascular system. At birth, Kaleb was diagnosed with dextrocardia and heterotaxy. In other words, Kaleb’s heart is located on the opposite side of his body and points in the opposite direction. He was also born without a spleen and with malrotated intestines.

Jun 30

2016 Speak Now For Kids Family Advocacy Day Hero: Kelly & Katie

rsz_kap_cha_advocacy_dinner_2016-151.jpgA few years after Kelly was born, she was diagnosed with a rare condition caused by a chromosome 16 deletion. Doctors had difficulty diagnosing Kelly’s condition because of the wide array of conditions linked to delayed development of motor and cognitive skills.  Understandably cautious but wanting a second child, Kelly’s parents underwent extensive genetic testing to determine their risk of conceiving a second child with the same chromosomal deletion. Although they were told the likelihood was less than 5 percent, a few months after their second child, Katie, was born she was diagnosed with the same chromosomal abnormality as her 4-year-old sister.

Jun 22

2016 Speak Now For Kids Family Advocacy Day Hero: Taniah

rsz_lurie_childrens_hospital_smith_taniah_photo2.jpgAt birth, Taniah was diagnosed with sickle cell disease, a disorder in which blood cells become sickle-shaped, inflexible and sticky causing a blockage that slows or stops blood flow. When this happens, oxygen is unable to reach nearby tissues and organs, impairing their function. As a result of her condition, Taniah has spent a great deal of time at Ann & Robert H. Lurie Children's Hospital of Chicago. She will be followed by the Hematology Team at Lurie Children’s for many years to come. 

Jun 21

2016 Speak Now For Kids Family Advocacy Day Hero: Els

rsz_childrens_hospital_los_angeles_page_els_photo.jpgEls lived seemingly a “normal life” for nine years. However, this all changed in June of 2015. He was diagnosed with advanced bone age disease and premature adrenarche. Both conditions are extremely rare and often misdiagnosed. However, the gifted medical team at Children’s Hospital of Los Angeles (CHLA) properly diagnosed Els’ conditions and immediately developed a treatment plan. After radically changing his diet, Els now checks in with his care team at CHLA every four months to monitor the progression of both diseases.

Jun 20

2016 Speak Now For Kids Family Advoacy Day Hero: Colin

rsz_hsc_pediatric_center_russell_colin_photo2.jpgAt age three, Colin was diagnosed with autism, sensory processing disorder and developmental delay. He has endured everything from allergy testing, developmental screenings and EKGs to neuro-psych evaluations, sleep studies and assistive technology assessments. At first, Colin was unable to verbally communicate, which led to his extreme frustration and self-injurious behaviors. Through the years, Colin has received speech and occupational therapy services at The HSC Pediatric Center which have miraculously allowed Colin to express himself and overcome his self-injurious behaviors. Additionally, his vocabulary and articulation have improved significantly. Colin is now learning ways to fine tune his conversation skills with the assistance of a communication device.

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