Ryan Giannini, Emeritus
Ryan Giannini
Medical & Scholastic Events in the Life of Ryan J. Giannini
When Ryan, "The Scammer" Giannini was seven years of age, the following symptoms began to emerge. His lower teeth started to loosen and his maxilla and mandible (upper and lower jaws) began to dissolve. The mastoid (bone behind the right ear), his occipital (where the skull and cervical spine join) and his cervical spine also began to deteriorate. After two years of antibiotics through a central line in his chest (he had to come home from school for this at lunch every day, then return) and another biopsy, a correct diagnosis of Gorham's Syndrome, a.k.a "Vanishing Bone Disease" was made.
Ry was also in halo traction for one and a half years as a preadolescent. Subsequently his cervical spine was fused to alleviate the pain and support his neck and head.
Ryan's life since seven has been punctuated perpetually with concomitant illnesses that have included infections, pneumonias, meningitis, pleural effusions (fluid collection in the lining of the lung) and pneumothoraces (collapsed lung). Treatments have ranged from IV antibiotics, hyperbaric oxygen chamber (5 days/ week for 3 months), daily injections, radiation, and chest tubes. As a teen Ryan spent a summer of hospitalization for pleural effusion wherein it was discovered that a portion of his clavicle and a few ribs were also affected by his disease. For half his life, Ry had been unable to take ANYTHING by mouth, except for an occasional sip of fluids. Ryan's nutrition has never varied since age ten: 8/9 cans of "Ensure" pumped each night into his gut through a tube. His compromised oral anatomy has made clear speech difficult. This was his greatest frustration, for he had a lot to say.
His very lengthy hospital stays in both Intensive Care and regular hospital units span four inpatient facilities in metropolitan Detroit (excluding clinic visits). There has been a parade of physicians, nurses and therapists in his life. Ryan had submitted to countless examinations, treatments, biopsies, and other invasive procedures and surgeries with quiet courage, equanimity, enterprise and an outrageous sense of humor. And ever the specter of a rare and unpredictable disease.
Ryan's academic life had been equally noteworthy. Due to multiple illnesses and hospitalizations, he was absent for most of his Junior High years. His "homebound" lessons consisted of two hours per week of teacher visits. He returned part time the first year and a half of High School, then full time until graduation.
Due to his own personal initiative, among countless other accolades, including induction into the National Honor Society, Ryan graduated “magna cum laude” from Stevenson High School in Sterling Heights in June of 2000. He then pursued a college career toward entrepreneurial leadership, his CPA and probably an MBA. He was also one of three permanent board members of the Chalfonte Foundation, a 501.c.3. Charitable Foundation created locally to assist children here and around the world.
Epilogue
Ryan underwent the first planned elective major surgery on February 12, 2002. Large portions of bone were taken from his hip and packed into his face beneath his eyes, particularly beneath the right eye where there had been none. An adult finger-size portion of bone was removed from his skull and screwed inside to the crook of his nose under the skin, then torqued so it would extend outward, a procedure invented by his physician Dr. Ian Jackson of Providence Hospital. There were many unanticipated consequences. An enormous degree of pain, swelling of the eyes closed for six days, (though forced open daily for examination); cessation of feeling in the surgical area of the face for several weeks, nerve damage to the right eye lid, supposedly corrected by subsequent "minor" surgery on July 31 - and Ryan's vivid recollection of all this since immediately after recovery.
After sequentially spending August, 2002 with the people he most loved: Jimeyer and Friends (a.k.a: Chalfonte Kids) at Chalfonte House, hosting a pool party for the St. Ephrem's Youth Group of which he was a leader, vacationing with his immediate family at a cottage in Canada - Ryan was admitted to the Beaumont Troy Hospital the night of August 21, 2002 because he asserted he was having difficulty breathing, (a condition which had been going on all month). Upon admission his oxygen saturation was 79, immediately raised to 100 when oxygen was administered through a nasal canula.
Cindy, his mother, stayed in his room all night. When she awoke or was awakened in the middle of the night, he seemed to be looking right at her with full-faced beaming smile, something of which he was incapable due to his facial distortion. Her son gave her a "thumbs up". A dream or a vision?
The next morning Jimeyer arrived at 11:00 AM. At 11:05 AM, while Cindy and Jimeyer were sitting watching him peacefully sleep, Ryan quietly arrested - and most probably died then and there. He was eventually "stabilized" on a ventilator and "lived" unconsciously for two more days. Though death was "pronounced" on Saturday, August 24, those closest to him believe he died on August 22, 2002. It was his beloved brother, Chad's 23 birthday. Ryan was 20 years old. We have often mused about "what if?" - he had died at Chalfonte? - or in Canada? - or in the middle of the night? - alone.