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May 24

2015 Family Advocacy Day Hero -- Andrea

Ruth.Andrea_300_.jpgAfter battling instances of dizziness, passing out, both low and high blood pressure, and digestive issues, Andrea was diagnosed with postural tachycardia syndrome (POTS). Considered an autoimmune disorder, POTS causes a patient’s heart to work harder to maintain blood pressure and blood flow to the brain. Mostly seen in women under the age of 35, the cause is currently unknown.

May 23

2015 Family Advocacy Day Hero -- Charlie

Castino.Charlie.jpgWhen Charlie was 3 years old he was diagnosed with Moyamoya disease, a rare disorder of the brain where arteries narrow, causing stroke-like symptoms. Because of this, he was required to spend a great deal of time being treated by the neurocritical care team and neurosurgery team at Ann & Robert H. Lurie Children’s Hospital of Chicago. He has had two successful brain surgeries and is doing very well.

May 22

Keeping Tech Time in Check During the Critical Developmental Years for Children


ASHA_TeddyBear_Facebook_Shared_Image_1200x630.jpgBy: Judith L. Page

Earlier this month, the American Speech-Language-Hearing Association (ASHA) released the results of a new national poll of parents of children ages 0-8 on their children’s use of technology. It found significant percentages reporting technology use by very young children. It also found more than half of the parents surveyed have concerns about the potential negative impact of technology use on the ability of the young to communicate. Among the highlights:

May 22

2015 Family Advocacy Day Hero -- Jasper

Bitter.Jasper.jpgJasper, a happy and playful 4-year old, was diagnosed with fragile X syndrome when he was a year old. A genetic condition, fragile X syndrome causes intellectual disability, behavioral and learning challenges and various physical characteristics. He has also since been diagnosed with autism.

Currently a preschooler, Jasper loves trucks, trains and construction vehicles. In addition to swimming and riding his bike, he also likes to read books and play with his trains. A citizen of the US and Germany, his ultimate career goal is to be a firefighter when he grows up.

May 21

2015 Family Advocacy Day Hero -- Audrina

Cardenas.Audrina.JPGDuring a routine ultrasound 16 weeks into Ashley’s pregnancy, the sonogram image indicated that part of baby Audrina’s heart was forming outside of her chest. Only eight in every million babies are born with ectopia cordis, a rare congenital malformation where the heart is abnormally located either partially or totally outside the chest; 90 percent of children with this condition are either stillborn or die within the first three days of life. An extremely risky surgery was Audrina’s only chance for life.

May 20

2015 Family Advocacy Day Hero -- Jack

Baker.Jack.jpgToday Jack is a happy, healthy 2-year-old who hasn’t let a tough start to life prevent him from being a cheerful toddler. Shortly after Jack’s birth, he experienced symptoms of neonatal abstinence syndrome (NAS) and spent 22 days in the hospital weaning from the opiates and other substances he was exposed to by his birth mother’s drug use during pregnancy. He then benefitted from the Fostering Connections program, a specialized foster care clinic providing a medical home at The Center for Family Safety and Healing at Nationwide Children’s Hospital.

May 19

2015 Family Advocacy Day Hero -- Alyssa

Genovese.Alyssa.JPGBorn a healthy baby, Alyssa was reaching most of her developmental milestones until, at 20 months, her lack of speech development and low muscle tone prompted a visit to Children’s Specialized Hospital for an evaluation. Thanks to that visit, Alyssa began receiving physical and speech therapy for muscle strengthening and to address her language delay and apraxia, a motor disorder caused by damage to the brain.

May 18

2015 Family Advocacy Day Hero -- Kai

Gay.Kai.jpgKai is a vibrant 16-year old who loves writing, drawing, listening to music and painting nails. Though today, you'll only notice her speech delay, as a little girl she overcame many scary battles. Kai was rushed to UH Rainbow Babies & Children’s Hospital immediately after birth to be treated for holes in her heart that were identified during her mother's pregnancy. At 6 months old, she had open heart surgery to correct her heart defect. Thankfully, she has not had any heart troubles since.

May 17

2015 Family Advocacy Day Hero -- Chase

Flaherty.Chase.ver.2.jpgChase was born at only 27 weeks gestation. He was diagnosed at birth with cerebral palsy, a stage 4 brain bleed, chronic lung disease and asthma due to his prematurity. At just 3 years old, he is currently receiving physical, occupational and speech therapy. Chase sees a lung specialist for asthma, and has had eye surgery from an issue caused by a seizure. Regular visits to a neurologist help make sure he is hitting his milestones as well as providing a regular opportunity to monitor the brain bleed.

May 16

2015 Family Advocacy Day Hero -- Everett

Ediger.Everett.jpgThanks to a prenatal diagnosis, Everett’s parents knew he would be born with spina bifida, a birth defect that impacts how the spine is formed in utero. His brain was also affected so he has a tube to drain excess fluid from his head. Despite over 20 surgeries to straighten and strengthen his feet and legs and to allow him to be continent, Everett still loves the hospital because he knows he has a “fan club” of providers supporting him to be healthy and active.

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