CCHS Graduate Shares Family’s Journey to Find Cure for Rare Syndrome

Alina Gorniak ’95 has fond memories of her Central Catholic classmates, close friends, and teachers.  These memories include engaging in class activities such as cat dissection in Mr. Marty Smith's anatomy class and periodic table exploration in Mr. Marty Perlaky's class; playing junior varsity and varsity soccer; cheering at pep rallies; attending football, basketball, and soccer games; enjoying Homecoming, Sadie Hawkins, and Prom dances; sharing comedic “talents” in talent shows; and listening to the soul-warming CCHS Gospel Choir...to name a few.  Those days were largely carefree compared to where she finds herself today.

Life turned upside down for Alina in 2013 when she was diagnosed with triple negative breast cancer, a highly aggressive form of cancer.  She underwent chemotherapy, surgery, and radiation that year.  It was a brutal, but thankfully successful treatment.  Unfortunately, it also left her with permanent side effects, one of which was infertility.

One year after treatment ended, test results revealed that she had scant to no ovarian reserve.  She and her husband, Jeremy Croke, were deeply saddened about the high likelihood that having biological children would not be possible.  Then about two years post-treatment, a miracle happened!  Alina learned that she was pregnant.  There must have been at least one viable egg remaining.  Alina and Jeremy were elated!

Their son, Simon, was born in May of 2016.  Their miracle baby, although happy, engaging, and sweet, was significantly delayed in achieving developmental milestones, such as rolling over, saying his first word, and taking his first step.  When Simon was 12 months old, Alina and Jeremy, with the support of Simon's pediatrician, started their mission to help Simon further develop fine and gross motor skills, as well as speech and language skills, through occupational, physical, and speech therapies, while searching for the cause of these significant delays.

Simon was assessed by an ophthalmologist; developmental specialist; neurologist; cardiologist; and ear, nose, and throat doctor with thankfully no problems discovered within their scopes of practice.  Then, an audiologist discovered mild-moderate, bilateral, sensorineural hearing loss, which shocked Alina and Jeremy because this could have explained the speech delay, but not the rest.  Thus, it was the geneticist they happened to see last that diagnosed Simon with Sanfilippo Syndrome, a fatal, neurodegenerative condition.  Currently, there is no cure for Sanfilippo.  Simon's parents were devastated to learn that their one and only child would plateau in his development as a toddler, rapidly lose his abilities to walk, talk, and eat, and pass away as a child or teenager, at best. 

Today Alina and Jeremy, partnering with Cure Sanfilippo Foundation, have launched a campaign at www.HelpSimon.com to raise funds to find a timely cure for Simon and other children with Sanfilippo Syndrome.  They ask that Central Catholic High School alumni as well as current faculty, staff, and students watch the video, donate if they are able, and share their www.HelpSimon.com video in as many ways to as many people as possible. 

Time is not something that kids with Sanfilippo Syndrome have on their sides.  Alina Gorniak ’95 and her family would greatly appreciate your support, and they share their gratitude for your compassion and generosity!