Adrenoleukodystrophy and Its Effects on the Family and Nursing Practitioners - Essay Example

Lorenzo's Oil is a 1992 movie that depicts the circumstances surrounding the development of the Olive and Rapeseed oil extract that is used in the treatment of ALD patients. It also chronicles the life of Lorenzo Odone, the little boy whose ALD affliction led to his parent's discovery of the treatment protocol that would help save other ALD patients' lives in the future. Also featured as an important aspect of this film is the way that the home care nurses treated their patient whom they knew was invalid. Their negativism was poisonous to the child's environment and contributed to the undue stress that the child and the family were already experiencing.

The Family as an Inspirational Unit

The main thing that inspired me about the family in this movie was the fact that they never allowed anyone to tell them what they could and could not do for their son. The Odones is the epitome of parents who put everything on the line in order to give their son a life. Granted that it may have not been a life that the boy would have chosen for himself and maybe, the boy at a certain point was already begging to die, but what kind of person would give up on his own life when his own family has fought so hard to keep him alive? Lorenzo himself was an inspiration as he bravely battled his physical and inner demons in order to continue with his life and his mission. Unbeknownst to the boy, he became a symbol of hope for all those suffering from ALD and his own family was a beacon of light for those who needed more than just medical jargon being spouted at them.

The attitude of the Home Care Nurses

It is because of this positive attitude of the Odones that I was saddened to see Lorenzo's two medical nurses display such unprofessional behavior while caring for him. A nurse is by profession a caregiver. A person who helps care for those who are ill and assist the family in dealing with their already trying situation. It is never the place of the nurse to dictate to the parents of the patient regarding what kind of medical treatment they think the patient should be having. A nurse should also display an uncanny sense of empathy for the ill and his parents. The attitude of the second nurse in the movie was something that should be disapproved of by any parent. Whether the patient is conscious of his position and condition or not, the latter should always be assumed and the patient should be treated accordingly. Even a comatose patient feels pain though he is unable to articulate it.

Memorable Scenes From the Movie

As far as I am concerned, there is no single scene in the movie that can be chosen as the most memorable. That is because the movie itself leaves a different kind of mark on the viewer. Whether you are an ALD parent or not, the reality is that the movie tells the true story of despair, acceptance, the search for answers, battling the odds, and finally overcoming the roadblocks set before them by nature and science. This family faced tremendous adversity and through their own willpower, cunning, and ability, they were able to save the life of their own son and in the process, saved thousands of other lives across the world in the process.

Conclusion

A parent whose child has his life on the line will do anything in order to save his life. The Odone family is living proof of that commitment between a parent and a child. Through their example, parents around the world learned that they have a voice that must be heard in the medical treatment of their children. It is the parent's right to pursue all possible avenues of treatment even if it means that they have to go rogue and experiment with the treatments themselves. What matters is that the parents do something, anything, to help ease the child's suffering. If all parents were like Odone we would not have any Orphan Drug cases in our medical world.

It is also important to note that although home care nurses are an integral part of medical home care, they have a duty to uphold and that is to insure the comfort of the patient and be a friendly face and adviser to the family. They are not to display any sort of distaste or disapproval of anything that the parent of the child wishes to do. Their place is merely to offer guidance and assistance. They do not have the right to judge nor dictate what course of action the parents should take in the care of their child.