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FLORENCE: Family, community unite to raise awareness for pediatric stroke

Mayor Craig Wilkie recently declared May to be Pediatric Stroke Awareness Month. However, the mayor is certainly not alone in his desire to increase public awareness and advocacy, a

by Amy Batista, Special Writer
FLORENCE — Mayor Craig Wilkie recently declared May to be Pediatric Stroke Awareness Month.
   However, the mayor is certainly not alone in his desire to increase public awareness and advocacy, as the Bongiorno family knows first hand the challenges pediatric stroke can present.
   ”We wanted to raise awareness for pediatric stroke in the community and put information out there for other families going through the same, possible outcome to start family support groups as there are none in our area that benefits families that work full time,” said Jennifer Bongiorno in an email on Dec. 13.
   Ms. Bongiorno’s two-year-old daughter Alexa was formally diagnosed with a prenatal stroke in April 2013.
   ”I noticed Alexa wasn’t meeting her developmental milestones, speech and motor, which concerned me and I pushed for answers,” Ms. Bongiorno said. “During one of her visits at (the Children’s Hospital of Philadelphia) with a specialist, the doctor felt the need to order a MRI of the spine.”
   The results revealed a syrinx – a fluid-filled cavity – on her spine, which warranted another MRI of her brain. The subsequent MRI, taken in October 2012, revealed that half of Alexa’s cerebellum was completely damaged due to a prenatal stroke, she said.
   ”We don’t know and will probably never know what caused it,” Ms. Bongiorno said, adding that without the MRI the family would not have any answers.
   Alexa only functions with half of her cerebellum. As a result, her mother said, every day is different.
   ”There are days where Alexa looks great, your typical two year old,” she said. “Then there are days where she is tripping and losing her balance easily.”
   In addition, Alexa’s speech is delayed, which can make it very challenging for her to communicate.
   Alexa has speech, occupational and physical therapies, each once a week through early intervention services.
   ”Words that would come easy for a two year old like ‘yes’ and ‘grandpa’, are never spoken from Alexa,” she said. “Also, she cannot walk up and down the stairs unassisted due to balance, coordination and depth perception challenges. Due to frequent falls and low muscle tone, she wears a helmet and sure steps (ankle braces).
   ”Communication is a struggle when she can’t what her needs are, which becomes stressful on all of us,” she added. “It’s difficult as parents to what your child go through these challenges. Also, there are many doctor and specialist visits to CHOP throughout the year, so missing work is also a challenge.”
   A watchful eye is always kept on Alexa and her surroundings at all times.
   ”In the community, we always have to keep our eyes on her,” she said. “For example, check her surroundings for stairs and uneven surfaces (especially outside). It’s a challenge with us working full time and making sure Alexa attends her weekly therapies.
   Another complicating factor is the fact that Alexa’s older brother Joey, 6, was diagnosed with autism in March.
   ”Two children with special needs that both require weekly treatments has been very challenging for us,” she said, though she was quick to note that her daughter “is the sweetest and loving little girl who “is strong willed and determined” and adores her older brothers Joey and Ryan Caruso, 8.
   The family is working on fundraising events for May 2014 to raise funds for the pediatric stroke research at CHOP.
   ”Family and friends have been loving and supportive throughout our journey,” Ms. Bongiorno said. “Also, Florence Township, especially the mayor and the council.”
   The Bongiorno family recently attended a council meeting with Alexa, and Joey as well as a specialist from the Children’s Hospital of Philadelphia to help raise public awareness of pediatric strokes.
   ”It’s pretty amazing how the community wants to help bring awareness to pediatric stroke,” Ms. Bongiorno said. “Unborn, infants and children have strokes. It doesn’t just happen to the elderly population.”
   According to Mayor Wilkie’s proclamation, pediatric stroke occurs at a rate of one in 2,700 live births each year and in 12 in 100,000 children per year, with stroke being the sixth leading cause of death in children.
   In addition, between 50 and 85 percent of infants and children who have a pediatric stroke will have serious, permanent neurological disabilities, including paralysis, seizures, speech and vision problems, attention, learning and behavioral difficulties, and may require ongoing physical therapy and surgeries, he said.
   ”Very little is known about the cause, treatment and prevention of pediatric stroke,” he added.
   ”Pediatric stroke risk factors, symptoms, prevention efforts and treatment are often different in children than in adults. Only through medical research can effective treatment and prevention strategies for pediatric stroke be identified and developed.”
   Mayor Wilkie “urges” all citizens to join him in supporting the efforts, programs, services and advocacy the Children’s Hospital of Philadelphia and Children’s Hemiplegia and Stroke Association provides as they strive to enhance public awareness.
   ”An early diagnosis and commencement of treatment of pediatric stroke greatly improves chances of recovery and prevention of recurrence,” Mayor Wilkie said.