Our eight-year-old Nico could likely give a pretty extensive tour of the Hospital for Sick Children (SickKids), his home away from home.  He could show off all the places he spends his time at:  the neurosurgery clinic; ophthalmology clinic; ears, nose and throat clinic; dermatology; cardiology; growth hormone program area; urology; gastroenterology; and neuro-psychology to name a few.

Born slightly premature, Nico was born with an unknown genetic abnormality and was having difficulty breathing and feeding on his own.  For his first five weeks, he underwent extensive testing, including MRIs, x-rays and other invasive procedures to determine the cause of his issues.  Doctors were unable to give us a diagnosis.

At 3 months of age his heart went into failure and he was rushed from his local hospital to the children’s hospital for emergency open-heart surgery.  Nico experienced numerous health complications following his first incident, including hydrocephalus (fluid on the brain), a brain hemorrhage, pulmonary valve stenosis and failure to thrive.  Over the years, he has endured 16 surgical procedures, six of which were major operations and we nearly lost him on at least 3 occasions.

We are still searching actively for a diagnosis for Nico as one has not yet been arrived at.  Genetics has said it is possible it is so rare we may never know, they have suggested for the time being we could name it “Nico Syndrome”.  Nico is the light of our lives, he and his two brothers have experienced much more that most kids their ages and they endure it with maturity and a positive attitude.  We are very proud of them and how they all handle the various issues that have arisen over the years.  They show us what is most important in life:  family!

Colette Orfeo
Ontario, Canada

 

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