Janine Harris was a young Newfoundland girl, who, at the age of 17 years, with thoughts of a full life ahead of her, devoted parents and friends, a love of life, music, laughter, art, and a dream of becoming a nurse, had her dreams destroyed, and her life robbed by Lou Gehrig’s Disease.

Clyde and Ruth Harris lived for Janine, and Janine in turn loved them without fail. Janine was the only child of Ruth and Clyde Harris. Beneath the thin veneer of normalcy, the grief of the loss of their daughter eighteen months ago is raw and difficult to witness. The light is gone from their lives. They were in Lethbridge, Bonavista Bay to visit their daughters’ grave, on what would have been her twenty-first birthday, and they visited me also. Their tears flow and one can feel the sense of complete loss they are dealing with daily. However, they tell me it is Janine's spirit that keeps them going, and they will do what they can to raise awareness of this stealthy, deadly disease.

Janine Cassandra was a student at Bishops’ College in St. John’s, NL, having dealt with and fought dyslexia with a steely determination and won. At some point she had started showing an interest in photography, and life was good. In January of 2000 this healthy girl began to have trouble with her right arm. Her mother noticed that when her daughter applied lipstick, her hand trembled. Janine attributed it to carrying a heavy backpack. However it worsened, and they sought medical help .Numerous tests were done and all resulted in normal readings. But her mother is a bright quick woman, her father a strong, intuitive man, and they knew that something was terribly wrong. July 26, 2000, they visited Dr. M. Stefanelli, and more examinations were done. During this time Janine had a fall, and the doctor remarked that the muscles of this young woman's legs were abnormally small. By this time Janine had learned to print with her left hand, fighting her disability every way she could. Her courage was truly shown when she continued to do volunteer work, reassure her parents and face her circumstances head on.. She received a Charles Grant Memorial Award for Perseverance and Achievement, for defying all obstacles, an award well deserved. Graduation was around the corner and she and her friends looked ahead with great anticipation.

By January 200l she clearly was deteriorating, although she continued to drive, and declared to one and all that ‘can’t’ was not a word she used, but soon that activity came to an end. More doctors, more tests, and a referral to a doctor in Ontario in February turned into a nightmare for her parents. The weather was bad on the day they were to fly to Ontario to keep the appointment with Dr. Strong, causing them to miss the appointment, and another was booked for April. The downhill trend by then was escalating and her mother was spoon feeding her. By the time the April appointment came to be, Janine was using a wheelchair. The letter to the Ontario doctor had frightening words on it for her parents. Those words were ‘QUESTIONABLE JUVENILE ALS’. Janine was not told about this, but the doctor in Ontario confirmed the worst-it was indeed ALS. Dr. Strong is a leading authority in the field of Neurology and ALS, and the confirmation of the diagnosis by him was devastating

April turned to May, and the family home was sold. Another was bought, one more accessible for their daughters’ wheelchair, the hydraulic chair and bed, and other necessary aids, because by this time Janine could not walk. She did not exhibit anger, she accepted the inevitable, and gave strength to her parents. When she no longer had use of either hand or arm, her father devised a way to let her access her Television, DVD player, and stereo. He taped the remote control to her foot and Janine learned how to change the channels with the toes on her right foot. We will never know what she was thinking during those difficult days, but she kept others going with her positive attitude.

June brought another series of painful treatments. The medical community had realized that by removing spinal fluid and replacing the same amount of fluid with Gamma Globulin gave the ALS patients some degree of mobility. She endured thirty of those painful procedures with grace. But even with her strong determination, the help of two devoted parents and a wonderful friend, Jennifer Hicks, she continued to slide downhill.. Vitamin E, physiotherapy, medication and everything that could be of any possible help was advised by Dr. Mark Stefanelli. But there were no new therapies. Janine and her friend Jennifer spent time together and this devoted friend kept Janine in touch with the teenage side of her life. Home care was accessed in July to help the family care for their daughter. Ruth had quit her job to stay home with her months before, but the time had come to seek help. Janine was by now totally disabled. . Despite her broken heart she Ruth continued to care for her daughter.

October was the point of a frightening turn of events. Janine was short of breath, and needed oxygen. She was taken back to the hospital. Her respiratory muscles obviously had become affected, and although Jennifer, Ruth and Clyde did their utmost, they could not reverse the course of this deadly ALS.

November came, and with it the cold winds, but also preparations for Christmas, a favourite time of year for Janine. She would point to ornaments and gifts in the flyer, and her father would go and buy them, bringing them home to his daughter. In early November Janine suffered a seizure and thereafter was dependent on home oxygen continuously, and her parents watched helplessly as they saw a bright beautiful girl become even more incapacitated. Finally on November 6,2000, her mother told her the worse news. And Janine was still cared for at home, where she wanted to be. Her mother says her sweet daughter really never got out of bed after that. Her friend sat with her and comforted her, although in turn Janine was comforting everyone else. She was a remarkable girl, facing death, yet choosing Christmas gifts. Her interest in hockey was still strong, and she teased her Dad about the scores of the games. Her mind was as bright as always, with a phenomenal memory and a quiet acceptance of her fate. She worried about her parents, and asked to talk to Aunt Ivy, her mothers’ sister. Aunt Ivy was special to Janine and she verbalized her wishes to her. She asked Aunt Ivy to make sure that her Mom would return to work, and her other wish, because of her love of Christmas, was that her photo be placed under the Christmas tree every year.

On December 4, 2001, she suffered another seizure and was immediately taken back to the hospital. Her oxygen deprivation was severe, but her memory still quick, and she had the phenomenal wisdom to refuse life support, knowing that her parents would have to make a decision to withdraw it at some point. She told her Aunt Ivy that she did not think her parents could do it, nor did she wish to put them though that devastating process. There was no going back home this time. Janine told her aunt she wanted to be buried in Lethbridge, a place she had visited often as a child. On December 5, 2001, with her devastated mother holding her close in a narrow hospital bed, she was given Morphine for discomfort, and in her mothers’ arms she quietly slipped away. The bright blue eyes of her father poured tears of grief and helplessness. Janine's journey was over. She would suffer no more, she never became the nurse she wanted to be. But I am sure that a young Newfoundland girl is in a place without pain and sickness, wearing the graduation ring of a nursing school, and an award for bravery. The incapacitation, the broken arm she suffered from a fall, the painful treatments, the oxygen tubing, the days of changing channels with her toe, were over. Her desolate parents honoured her wishes, overwhelmed by her courage. Her Dr .Mark Stefanelli attended her funeral, having developed a close and caring relationship with this special girl.

May 23, 2003 would have been her twenty-first birthday. Her parents came to visit her resting place, and the tears flowed, and the memories surfaced, as they struggled to deal with the heartbreak of losing their only child. All they had endured, all they had tried, from the first symptoms Janine had, to her confirmed diagnosis, to her leaving this world behind has stunned her parents. They too are brave, and need have no regrets. Six months from a confirmed diagnosis of ALS to death has left them reeling in pain and anguish.

They are strong people, a testament as to where Janine found her strength of character. Both of them are working with the ALS society, helping to raise money for research. It is therapy and a constructive way to deal with their grief. Nature has programmed us to somehow accept the death of our parents, but nature cannot prepare a parent for the death of a child. Clyde and Ruth should be comforted by knowing they did all they could, loved her so much, but the loss will hurt until the day they die themselves.

When you see the symbolic blue Cornflower symbol, and the ALS signs set up in different places in June please remember Janine, and her parents. Janine's journey is over, but many are still struggling.

And also remember a bright and beautiful nineteen year old Newfoundland girl, the youngest to succumb to this disease in Canada, who died as she had lived, thinking of others, facing difficulties head on, reminding us just how we should live. It reminds us to give our loved ones that extra hug, just as Janine’s’ father showed her mother and her how to hug. Her tiny mother would straddle the wheelchair, and he would hold Janine’s’ arms up around her Moms’ back, allowing her to hug her Mom. And their tinkling laughter would ring through the house. And Ruth will forever remember the warmth of those hugs. A beautiful memory in an expanse of desolation and sorrow, given by a father to the two women he loved more than life itself.

As Ruth and Clyde prepared to leave for home, she gently pulled from their van a little kitten. A soft tiny kitten, something to hold, to shower with love and care. They need this little kitten. Janine will forever be remembered, and may Clyde and Ruth be comforted by knowing that others do care, as they work through their grief.

"Love comforteth like sunshine after the rain"–William Shakespear.

Bonnie Jarvis-Lowe, RN.Ret’d.

"A minute is never long enough for those who ask you if you can spare one." Anonymous