Einstein said: “God does not play dice”, Stephen Hawking says: “God does not only play dice.  Sometimes He also throws the dice where they cannot be seen”; we are able to say: “God plays dice and sometimes gets a bad roll”. 

 

When nature gives us a bad roll, or deals us a bad hand, when the genes are mixed up, the results can be undesirable.  It is then when these bad dice rolls are manifested in the form of illnesses, illnesses that in general are classed as rare, but that however affect a large sector of the population in different ways.  They can have negative consequences for a large number of people, from the patients themselves, to relatives and friends and consequently, upon the society in general.

 

We, the sick minority, the ones that suffer neuro-degenerative illnesses with different names, each one even more difficult to pronounce as the 4,000 Spaniards with Amiotrofic Lateral Sclerosis, or the 8,000 patients of Ataxia, and others of the more than 300 rare and incurable types of illnesses, each one different but with the same feeling of pain and impotence because we know that tomorrow we will be at best the same, never better…

 

We that see our days pass in wheelchairs, in beds, constantly depending on the support of our nearest and dearest and with the compassionate looks of strangers but without anyone to cure our illness…

 

We, children or adult, human beings with full rights, already born and not frozen cells, do not understand the paradox that while there is no legislation to stop cells being thrown away, frozen, abandoned or destroyed, these cells cannot be used in medical research because of ethical problems, cruelly erasing the hopes of thousands of patients, in whose hearts, already battered, begins to shine a tiny light of hope… 

 

We, the ones that never would do ill to anyone, even if it would improve our own lives, because we know better than anyone else the effect of progressive and continuous suffering…

 

We, innocent but condemned by life, that know from experience the unfairness of life, also thinking of those who will in the future take over the baton of the suffering in the lottery of the life…

 

We…

 

WE MANIFEST

 

 

That we have the right to life, and if that right is one of the most elementary of human beings, it should also be the right not to lose it and to improve it, and therefore we support the investigation with embryonic mother cells with a therapeutic purpose, with the full conviction that this will not break the rights of other human beings and that our institutions will be guarantors of it.  And in the same as electricity is good in spite of the existence of the electric chair, we can not demonize beforehand something which has the risk of a criminal and illicit use.  This risk must be avoided but not at the expense of not healing patients, not at the expense of our right to life and to health. 

 

It is a duty for any state to make available to society all the resources that can improve its quality of life.  It is the right of the citizens to access or not those resources.  But it is fundamental that governments support and stimulate the investigation in a field that offers solid hopes to people affected by illnesses of genetic origin, as is the case with the investigation using pluripotential cells.  Therefore, we ask, we even require that the states, that should protect all of the society, that they legislate from an ethical point of view, not tilted towards any particular religious beliefs, and not submit to the pressures of groups that want to impose their particular moral views.

 

Accordingly, we call on all social sectors and good people everywhere not to look away, because, unfortunately, maybe in the future they could desperately need these therapies themselves; and to join together to express to their representatives their support for this investigation and the need to develop the appropriate procedures to use in the research on the spare embryos from the in vitro fertilisation; as according to the experts, of the 35,000 frozen embryos, 85 percent will no longer be viable because of the damaging affects of the cryogenic process.  Furthermore, as citizens, we ask that each of us should know their place in a democratic and ethical “state of right”, knowing as we do that our lives are in the hands of people with very strong views about what is right for everyone else, views with which those below them in society do not necessarily agree; and conscious that our future hangs by a fragile thread tied to political interests and a different understanding of what is ethical, since a state should not be dictated by a religion but by the principles of humanism. 

 

It is somewhat trivial, given the urgency dictated by the suffering of many patients, to lose time in sterile polemics that only postpone the inevitable; as the science advances, this work will be done sooner or later in other countries, and inevitably Spanish researchers will move to those countries.  And if that is correct, why are today’s patients condemned to death? 

 

 

Written by Alberto Suárez de las Heras

(sufferer from Friedreich Ataxia,

Villaralbo- Zamora- Spain).

 

Translated by Dacil Pino Brumberg