Sick of Mucopolysaccharidosis without resources receive assistance from an anonymous.

Spain, February 2013.- a person who has wanted to keep your identity Anonymous has made a donation Association of Mucopolysaccharidoses and syndromes related (MPS), so this bring it in from the two patients it considers more appropriate.

MPS Spain Association has decided that you prime the social need to the disease itself and therefore intended that money to two families who currently are in a particularly difficult situation.

The mucopolysaccharidoses are a group of very frequent or rare disease caused by a genetic alteration. They are hereditary and children who suffer from are not capable of producing an enzyme that degrades the so-called mucopolysaccharides (complex carbohydrates) to simpler molecules. The lack of this enzyme causes mucopolysaccharides accumulate in the cells of all the organs, especially in the brain, and originates the multitude of physical anomalies. Among them are hyperactivity, sleep disorders, loss of speech, in some cases, mental retardation and dementia and physical deformations. This makes that children do not usually live beyond the age of puberty.

Queralt with his family.

To me did me not time or to think. I directly put to cry like a Madwoman. At least the late receipts of light, water, of finance and what they owe to the friends can pay for it. Because leave you leave you leave, and at least we have been able to return it ”. This is what they respond with admirable fortitude Queralt asked what thought when he was told that they were going to give an aid of €1,500 from an anonymous donor.

Queralt and Ernesto are the parents of a 3-year-old boy and another boy of 8 years with Hunter or Mucopolysaccharidosis type II disease. There are only 38 cases of Hunter in Spain. There is no curative treatment, but an enzyme replacement therapy that minimizes the symptoms.

According to the degree of severity of the disease, patients have a different life expectancy. In the most severe cases they die at an early age. Queralt is perfectly aware of this. I with what I go to bed every day is that I know what it is, I know what will happen and I would like that the time that has to be could give all to my son … but I can not. Knowing that and not be able to give it, for me is the hardest ” says Queralt containing tears.

Two parents without jobs, income subsidies and aid dependence do not reach the $1,000 a month and only House paid $920. They carry three months without paying the mortgage on the House, because among other things, only in pharmacy (medication and diapers) expenses arising from the illness of his son have to spend each month from 150 to €200. We have been long time asking the administration support for these expenses health because it is assumed that corresponded to my son, but apart from all claims of the world, we have not obtained that they tell us more than neither Yes, nor no, but the opposite ”.

Jordi Cruz, President of MPS Spain.

Jordi Cruz, President of MPS Spain has stated that: the associations of patients are accustomed to receiving, but we also have to get used to. The disease is not only who suffers from it, also of those who surround him and care for him. You have at home a person with Mucopolysaccharidosis carries many implications. If in addition the living conditions are extremely difficult, everything becomes much more complicated. Why MPS decided to allocate the $3,000 donated was who in a most difficult situation. The number may not seem large, but for these families it has meant a lot. Something as large as the appreciation that since MPS feel towards a person that in addition he had the humility to keep in anonymity. ”

MPS Spain is an association born from the union of families affected by all types of Mucopolysaccharidosis. Declared of public utility by the Ministry of the Interior, currently account with more than 900 members in Spain. in addition to working for the improvement of the quality of life of those affected and their families, promotes research that has helped to develop new palliative treatments for these diseases.