“We will never forget the phone call from our genetic counselor with Grant’s diagnosis. You could tell she didn’t want to make the call, but the kindness in her voice still resonates with us today,” says Grant’s mom, Alicia.
It all began a few years ago on Christmas morning when Alicia was rushed to a nearby ER with pregnancy complications. After being induced and given oxygen to help support him, Grant finally arrived in the wee hours of the following day. Grant’s fight to survive continued as he was in respiratory distress and required immediate medical attention. The neonatal nurses rushed in to save him and then admitted him to their Neonatal Intensive Care Unit (NICU). While in there, the neonatal doctor noticed a heart arrhythmia. An ECHO revealed additional heart issues. Other potential abnormalities were identified and the decision was made to transfer Grant to Nationwide Children’s NICU. After multiple tests and scans, Grant was finally able to go home on New Year’s Eve. A few days later, his parents received that fateful call from the genetic counselor at Nationwide Children’s.
Grant was diagnosed with 22q11.2 deletion syndrome.
“Grant encompasses over forty conditions. Most are atypical with 22q, however, no matter typical or not, he is followed diligently by a sundry of amazing specialists at Nationwide Children’s. His conditions can range from minimal to severe to life threatening. He has had countless procedures, 11 surgeries, and gone under anesthesia 12 times,” says Alicia.
The 22q Center at Nationwide Children’s provides children from around the world access to a multidisciplinary team of expert clinicians. Under the joint directorship of Richard E. Kirschner, MD, FACS, FAAP, chief of Plastic and Reconstructive Surgery and speech scientist Adriane Baylis, PhD, CCC-SLP; the 22q Center team provides comprehensive individualized diagnostic and management services in Genetics, Cardiology, Plastic and Reconstructive Surgery, Speech and Language Pathology, Developmental Pediatrics, Immunology, Neuropsychology, Behavioral Health, Audiology, Otolaryngology, Endocrinology, Gastroenterology, Hematology, Neurology, Orthopedics and Psychiatry.
“We are fortunate to have such an incredible team of doctors Nationwide Children’s Hospital who specialize in Grant’s genetic disorder – the 22q/Craniofacial Clinic. The passion and dedication of Dr. Kirschner and Dr. Baylis, who lead this clinic, are palpable. They are truly a force to be reckoned with! Since the beginning of Grant’s journey, our beloved Dr. Jonathan Grischkan from Ear, Nose and Throat Services, has been there, performing the majority of Grant’s surgeries and been involved in his overall care,” says Alicia.
Currently, Grant is very active and loves to play. He loves sports, music, dancing, and playing instruments. He’s an expert at navigating an iPad and enjoys Paw Patrol, Spiderman, Disney Pixar’s Cars, Planes, and Wall-E. He is enrolled in the IEP/Peer Modeling program at his preschool and truly enjoys making friends. Grant will be making lots of new friends as the participants pass through his mile during the Nationwide Children’s Hospital Columbus Marathon & ½ Marathon.
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