1. What was the primary disease in this movie and whom did it affect?
The primary disease in this movie was ALD ( adrenoleukodystrophy) and it affected Lorenzo M. M. Odone and also many other
kids.
2. How would you classify the disease' impact on the patients functional status..mild, moderate or severe, and why?
The disease' impact on the patients functional status is quite severe. It affects not only motor functions but also
neurological at the same time. At first it affected Lorenzo by causing him to act out in what seemed to be tantrums.
It looked as though he was merely hyperactive. Slowly he lost his ability to balance, like when he fell off of the chair
at Christmas, which progressed into loss of further motor skills such as walking. The disease also caused episodes that
acted a lot like seizures but where diagnosed by the doctors as actually being caused by saliva building up in the throat
and mouth. Other impacts and problems associated with it were blindness, deafness, loss of speech, paralysis, dementia,
and others. All of these cause the impact to be quite severe on the patient.
3. In your opinion, how did the research doctors regard Lorenzo's parents?
I personally feel that in the beginning the research doctor's treated Lorenzo's parents with very little respect.
They told them at the beginning that there was pretty much "no hope and no treatment". They would use medical terms
that his parents could not understand when they could have explained it in a much simpler way. They even used slang
phrases such as the disease being a kind of " genetic lottery", which should have never been used. They treated the
whole situation badly and referred to it more as a protocol than anything else. Later in the movie some of the research
doctor's began to sympathize with his parents and actually listen and care about the situation rather than acting like it
was something in a medical book.
4. "The roles of the researchers were juxtaposed or changed in this movie." Explain why this is true.
In the beginning the researchers were the ones doing all of the experimenting and testing while his parents were the ones
listening and taking in information. As time went on this changed. Lorenzo's parents actually became the ones
doing all of the research because the others were stuck in their thoughts and would not look at ALD in any other way than
that which they already did. The researchers ended up being the ones learning from Lorenzo's parents and then working
alongside them to further the research which had been jumpstarted by his parents.
5. Dad had a breakthrough at the library - explain the paperclip analogy/model.
The dad's breakthrough in the library was amazing. Each paper clip equaled 2 carbon atoms. These would connect
to other carbon atoms in chains, such as C2-C4-C6. These chains where trying to make monosaturated fats.
One chain was considered the "good guys" and one chain was considered the "bad guys". The dad said that he was the "good
guy enzyme" and took a carbon and put it on his chain, while Deidra was the " bad guy enzyme" and put a carbon on her chain.
This was done at the same rate. He began to realize that the faster the "good guys" went, the slower the "bad guys"
went. The same enzyme was used for both chains. Then he said that if you kept the enzymes busy by making monosaturates you
could distract the saturates from making elongated chains. The reason that the olaic acid was partly successful was
because it stopped the chain at C-18. They had to have a 2nd barrier to be able to stop the chains from former between
C-22 and C-24. This, he found out, could be done by the patient ingesting rapeseed oil, or erucic acid. He believed
this would inhibit the actions of the disease.
6. Dad was concerned when Lorenzo's friend came from Africa to live with the Adone's and care for Lorenzo. What was
Dad's primary concern?
Dad was concerned with the fact that Omore (spelling) had not seen Lorenzo in a long time. The last time he saw Lorenzo
he was playing like a normal kid. He thought that Omore would be shocked and not able to deal with the condition that
Lorenzo was currently in .( he was also concerned with the fact that he doesn't speak much english and was used to an entirely
different lifestyle than the one he would be faced with)
7. Who was the first human subject to consume the oil and how was it dosed and administered through what portal (ingested,
injected, absorbed, inhaled, or other)?
Deidra, Mrs. Odone's sister, was the first subject to consume the oil. She ingested it on a salad at the dose
of 8g. ( or as Lorenzo's dad said---4 parts olaic acid and 1 part erucic acid)
8. What is the role of money in this research product? Who paid for most of the early groundbreaking research?
The role of money in this research was to pay for all testing to be done on the new acids, which involved paying for the
manufacturing of the acids in small quantities. It also paid for further research to be done on kids with ALD.
Most of the groundbreaking research was paid for by the Odones and later by some of the other parents of kids with ALD.
9. The critical mass theory suggests that multiple researchers conclusively find (or frequently stumble upon) an answer
to a scientific inquiry. Were the researchers on a single path to finding a cure for this disease?
I feel that they were not. They were all trying to figure out the same thing, what would stop the symptoms and problems
of ALD, but they were all going about it in their own ways without wanting to really pay attention to other ideas. Some
different research ideas taking place were a new diet specifically formulated for patients with ALD, chemotherapy, and also
the Odone's method of using the oils. If they had been able to put there ideas and research together into a single pathway
I feel that the research could have been concluded alot sooner.
10. Consider ethics for a moment. Does this movie represent a appropriate ethical model for research. Defend your answer.
Yes it does. Dealing with ethics you take into account morals and what is seen as "right" or "wrong" in a given
situation. To the Odone's their research and attempts to keep Lorenzo alive and fighting were worth every minute, not
only for them but for other kids and families dealing with ALD. To outsiders looking in, such as the nurses and other
researchers, they saw the Odone's attempts as wrong and devastating to Lorenzo. They seemed to think that by keeping
Lorenzo alive they were only prolonging his suffering and not helping him. This happens with alot of different cases, such
as the subject of Euthanasia and also Stem Cell research. It all comes down to what is publicly viewed as right or wrong.
That is why I feel that this movie represents an ethical model for research.