"Let's Talk Live!" | News Channel 8

Wow! Yesterday was exciting. Sarah and I were guests on "Let's Talk Live!," a noon daily talk show hosted by Rebecca Cooper and Doug Mckelway weekdays. It was exciting to visit a real, live television studio backstage, and especially to be able to spread the word in our community on behalf of Sarah's family about our fundraising efforts to help meet some of Sarah's extraordinary medical expenses due to pediatric brain injury. Already we are working hard to line up sponsors and donations toward an online auction this Fall. All of the proceeds will go directly to Sarah's Special Needs Trust Account (as do donations made on this site. You need not have a PayPal account yourself to be able to donate using any major credit card).

Doug and Rebecca could not have been nicer or more attentive hosts. They also asked incisive questions that enabled Sarah and I to be a voice to spread awareness among other parents about the dangers of Group B streptococcal bacterial disease, or GBS for short. (Sarah caught it as meningitis as a young infant, resulting in profound brain deficits.) Below is our appearance on the show and talk on GBS. The heartfelt calls and e-mails that we have received after doing the show have been very moving and all of us in our family are very appreciative.

Credit: News Channel 8's Video Vault

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Posted by Sarah's Mom at 3:17 PM Permalink

Step By Step

According to information published by the US Centers for Disease Control and Prevention (CDC), group B streptococcal (GBS) disease has been the leading bacterial infection associated with illness and death among newborns in the United States since it first emerged in the 1970s. In infants, GBS disease, the very same syndrome that befell Sarah, is characterized as either early-onset (occurring in infants <7 days of age) or late onset (occurring in infants >7 days of age). And, as also with Sarah, who was born a "preemie," approximately 25% of the cases of neonatal GBS disease occurs in premature infants. In her case, GBS disease manifested itself as neonatal meningitis. Overall, the case-fatality rate for GBS disease is estimated to be 5%–20% for newborns.

Like Sarah, survivors of neonatal meningitis are more likely to have moderate-to-severe disabilities than are other children, including cerebral palsy, seizures, cognitive and learning deficits, visual and hearing problems, and often other, more subtle disorders. Growing up with the long term effects of neonatal meningitis, or persistent brain injuries, means taking each new day one step at a time. Among the various treatments we have experienced are:

• Drug therapy to prevent or control seizures associated with her cerebral palsy (CP) and/or to help reduce painful spasticity in her muscles.
• Botox injections to provide reduced spasticity, increase range of motion, and reduce continuous fisting of her hands.
• Gait training using a special device that simultaneously controls Sarah's weight-bearing ability, posture, and balance over a treadmill or over ground.
• Patterning (both physical and auditory), in which Sarah lies down while others move her arms and legs or repeat sounds (often with music) for mimicry in a way that is said to stimulate brain activity.
• Dietary considerations to watch her weight since she's not as mobile as we hope she will become.

Below is a short video clip that demonstrates how a gait trainer is used. For now, Sarah must use her wheelchair most of the time, and, of course, she's much younger than the young child viewed in the video. But as Sarah faces her challenges, every day brings new advances -- step by step.

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Posted by Sarah's Mom at 12:26 PM Permalink

All About Sarah

by Sarah's Mom

Hi there! My name's Michele and I am Sarah's Mom. I am also mother to her two wonderful siblings -- Sarah’s twin brother, Joshua, and her younger, 9-month old sister, Emma. In addition to Sarah's challenges due to her brain injury as a newborn, my husband also battles a form of muscular dystrophy. As a family, we have had our abilities and resources tested, it's true (the "tattoos" of life), but we also share a lot of love and a lot of laughter. More than anything, I am grateful for my wonderful family, whose story is also Sarah Bear's. With lots of support from relatives and friends, we strive every day to make our children’s lives joyous ones, filled with opportunities, and wonderful memories.

Meet Sarah Bear

by Sarah Bear's Mom

Sarah was born a beautiful, and healthy baby on March 6th, 2007, along with her fraternal twin, her "big" brother (older only by one minute). Then, a little over a month later, on April 16, 2007, Sarah became very ill and we didn't know what was wrong. We rushed her to the hospital only to learn she had a life threatning case of meningitis due to a late on-set Group B Strep infection (GBS). Sarah's brain was swelling, but we hoped and prayed for a miracle that she would not be affected from this deadly infection. Unfortunately, Sarah's brain scan revealed a profound loss of brain tissue and her medical team predicted she would be at the level of a newborn for the rest of her life, if she even survived.

BUT!!!... (we like this part, hence the exclamation points)...

Photo and video editing at www.OneTrueMedia.com

Not only did Sarah survive, she is doing far better (lots more!) than her doctors ever predicted, despite living and growing up with a seizure disorder, cerebral palsy, sensory integration disorder, developmental delays, and vision loss. In fact, this vivacious, little toddler girl is learning both to sit and stand up, gives sweet kisses (the best!), and even says a few words and hums various songs. We believe all of this is due to intensive early intervention and the love and encouragement of family and friends. For this, we are very thankful. Please help Sarah reach her full potential!

Donations:

Within the next two years (2009-2011), we hope to meet our goal of raising $25,000 - $35,000 in order to fund three different treatments/therapies for Sarah that we believe will help her reach her fullest potential. Time is critical because most children make their greatest gains within the first three to five years of life. Unfortunately, health insurance does not recognize or cover any of these therapies from which Sarah, who is now two and a half years old, could benefit. They include:

• $5,000 per round of HBOT treatments - Hyberbaric Oxygen Therapy
• $6,000 for a 3-week program - Therasuit Intensive Therapy
• $25,000 for a round of stem cell therapy^*
  

^*Currently available only in Europe, China, and elsewhere outside the US

Posted by Sarah's Mom at 3:05 PM Permalink