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Archives for: February 11th, 2016

Running on Air for Rare Disease Day

Written by Lisa Sencen on February 11, 2016

“I want to shake up what people think is possible,” says Mary Kitlowski – “ both people with rare diseases, and people without. If I can make a difference by doing it, it makes it worth it.”

Mary has taken on what for most seems insurmountable – running races… Read More

Living Bella Soul

Written by Lisa Sencen on November 15, 2015

As Shannon tells her story, she starts with “we.” Shannon was born with a twin sister, Lauryn, who at twenty days of age contracted meningitis and was later diagnosed with cerebral palsy. She spent countless hours in the hospital alongside her sister, as she fought against the complications that arise… Read More

Life with CGD

Written by Lisa Sencen on November 5, 2015

In April 2013, the Cooley family welcomed their second child, Sean Ryan. After some problems regarding his weight during the pregnancy, the Cooley’s were thrilled when their healthy baby boy was delivered. At two-and-a-half months old, the Cooley’s were worried that Sean was having stomach issues, but when they saw… Read More

Living with Seizure Disorder

Written by Lisa Sencen on November 3, 2015

In July of 1999, Andrew Ablondi was born to two loving and excited first-time parents. Although the pregnancy was uneventful, the delivery was long and Andrew arrived with a misshapen head, a swollen and bruised face, and he struggled to breathe. On his second day, Rachel, Andrew’s mother, had trouble… Read More

They Said things like, “She’ll Grow Out of It”

Written by Lisa Sencen on October 28, 2015

Abigail MacCurtain was born a happy and healthy baby girl in the winter of 2011, despite being born at 35 weeks due to Premature Rupture of Membranes (PROM). The only notable problems were a large birthmark on her head and a failed Auditory Brainstem Response (ABR) Test, but medical professionals… Read More