Monthly Archives: September 2009

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¿que escucha Maria ?

Hear what Maria?

Hi, I write these lines after reading the mail that we received from John, a member of the organization of the Half Marathon Petrer (Alicante).
We write invitations to participate in this edition of the race, making us the honor to assign the number 2 back because it is the second year that we participate. For us it is very gratifying that we are welcome not only a test, but it year after year, we are invited.
This year we will have some changes that make us better carry over the miles, as the new car thanks to Blue Line sports team, Maria will make a lot more comfortable, and step to me to push costs less. Also luciremos luggage through Valencia Association Rett Syndrome. What I hope does not change, is the great reception that we have in this city, and above all the friendliness of our small Romero family, who live there.
We are eager to perform that will be our first race this season. See you next day in Petrel October 18 ...

Maria and Josele.

Medications needed ... are all covered by the SS?

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Hi, recently, we observed that Maria drops her abundant hair, and dramatically. We got in touch with your pediatrician, and recommended a shock treatment, it's supposed to be caused by vitamin deficiency of some sort. So without hesitation acquire prescription drugs. What was our surprise when none of the items, enter the Social Security system. Specifically they are quite expensive, and of course, to see you do, do not buy them and see Mary as her hair falls out, or pay and tests to see what happens, although you will not do anything.
Since Maria was diagnosed, it is now about eight years as a product used for constipation, and you need every day, whether or if. This product is not covered either, and remember that constipation is a clear and obvious symptoms of Rett syndrome, and suffering all girls.
In any case, there must be clear that not all health care needs a person with the condition of Mary, are subject to the Social Security system, and we have to deal with them without hesitation.
It is important to note this detail as popular is the idea that all they need is free, and nothing further from reality ...
Sure you know most similar cases, I think there are regions that are not even including diapers.
Make it clear that this must change, and that girls and families that unfortunately they live in this world do not receive the necessary support by the government ....

Josele and Mary