Stories

McKinley Fay

McKinley, and her identical twin sister, Madeline, were born on September 13th, 2011, in Greenfield, MA. McKinley’s mother and father, Emily and Jim, and her older brother, Crosby, welcomed the girls home, and began learning together what life would be life as a new, larger family, that was immediately full of much more love than they could have expected. Crosby took naturally to his new role as the big brother, compassionately playing with, and even singing to his little sisters. Emily and Jim navigated sleepless nights while continuing their work as dormitory parents and teachers at a junior boarding school, and retrospectively benefited from a fair bit of memory haze. The five Fays were very happy together, and excited to see what life together would bring.

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Being an identical twin, McKinley’s family was always looking for distinguishing traits between her and her sister. By the New Year, as the girls approached four months old, those traits began to suggest more significant differences. McKinley was enrolled in the local Early Intervention program whose support and guidance over the next three years would prove to be priceless. The next year brought several visits to the neurologist, physiatrist, geneticist, orthopedist, gastroenterologist, and near daily sessions with her social worker, physical, occupational, and speech and language therapists. Ultimately, McKinley received a diagnosis of spastic quadriplegia, a form of cerebral palsy. Cerebral palsy is a form of brain damage that affects muscle function, and spastic quadriplegia identifies that all four quadrants (limbs) have tense muscle tone. The consequence is that McKinley has very limited control over her body, as well as her ability to produce speech. Yet never in her life has she been unable to make her joy in playing games and having fun, or her love of being with her family, clearly known. Her contagious smiles and gleeful squeals have melted the hearts of every person who has come to know McKinley. Her persistence and commitment to making herself understood have also led to the development of many adapted sign language expressions, as well as the ever-improving use of assistive communication devices, to allow McKinley to express herself with increasing complexity.

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Consistently, McKinley makes clear her desire to be playing and adventuring with her family. She enjoys going for hikes up the hill riding in a backpack when younger, or in a rugged stroller as she has grown. She revels in her adventures afloat with her family in their small sailboat, secured to a custom seat while they navigate the warm summer waters of Cape Cod Bay. McKinley thrills at the rush of speeding across the ice of the hockey rink chasing her brother and sister while being propelled by her parents, secured within her walker. Perhaps most of all, McKinley has truly loved being able to go skiing with her family, having fit safely in a hiking backpack, riding the chairlift with her Dad while taking in the view as it smoothly passes by, and then enjoy the sensation of twisting down the mountain side. However, as she has grown, skiing in the backpack was no longer an option.

In January of 2016 McKinley and her Dad went to Mount Snow in Vermont to experience their first adaptive ski lesson. The team at AbilityPLUS was tremendously helpful, kind, and capable. On a cloudy, breezy, cold day, McKinley braved the elements to charge forth riding in a biski, piloted by one instructor while two other volunteers flanked her, while Dad skied along in front of her. It took McKinley only one bunny hill lift ride to demand the next trip be to the summit, and it took only a few turns for her to demand that we go faster, and turn harder. McKinley, all of four years old, was proving to be something of a thrill junky! By the end of a fantastic day at Mount Snow, both McKinley and Dad knew this was going to be her future on snow, and they wanted to experience the thrill and the joy as often as possible. McKinley’s Dad reached out to friends asking if anyone had leads or ideas on where to find a used ski, as a new one was going to be financially impossible. Within hours, a mutual acquaintance brought McKinley’s Dad and Jothy Rosenberg in touch, and the rest is truly a fairy tale. Jothy was excited to learn McKinley’s story, and even more excited to make her dream a reality. The Who Says I Can’t Foundation enabled McKinley to receive her own Enabling Technologies Bi-Unique biski. Working with Enabling Technologies, McKinley and her family were able to select the perfect fitting ski, and McKinley was even able to choose the color. The ski arrived in less than three weeks, and McKinley took her first runs in her own ski hours after it was delivered. Two days after that, McKinley and her family enjoyed their first ever Fay Family of Five ski adventure. This was truly a day none of them could have dreamed would come true, or be as wonderful and enjoyable as it was.

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McKinley, and her family, are incredibly grateful, and fortunate, to have been chosen by Who Says I Can’t to receive this support. McKinley looks forward to many years, and thousands of turns in her ski, with her family.      

                                      — Jim Fay, 26 Feb 2016

 

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