New car for Maria ...

Do you want to Inform @? You can subscribe to my RSS feed . Thanks for visiting!

We recently had to change street car, for which we already have performed well over three years, was already badly damaged. It was a time filled with many new things some good, some not, but in the end we are sure you have done your task perfectly.
I remember when Mary sat for the first time in that car, was the first car "postural" sitting, I assure you looked much car and little girl, but what if you could see was that this car was no longer a car "normal" and out into the street would be more "heavy" than we imagined.
But time passes relentlessly, and that car has made us live and go a long way.
Now we have another, bigger, but much better, very well thought out and designed, where Mary is very comfortable, has everything. But the best new car has been the professionalism, generosity and affection with which we have tried where we have purchased. I have to say it is very important that for once, we had to worry about anything, just say what we needed, and everything else ordered the orthopedic shop. This car has been covered by the regime of the SS and we have not had to take charge. That is all this, I'd like people to be responsible for all this effort, have the comfort that helped Mary to make life a little better.
Thanks Gloria, for everything you did for Mary, and I'm sure many other people. What matters is not what is done, but as it is ... Do not ever change ...

Marathon Barcelona 2010

Hello friends, I have been without writing anything, and think not that I've had issues, if not the opposite, what happens is that they wanted to take center stage in the campaign fundraising of this marathon. If the race but we have made, and the video too, and good I can say about a city that has been ideally from the first to the last person we encountered, a city that lives the Marathon from within, that is involved in it and the race does not bother anyone for any of its streets, that does not let even one of the important places, and has a massive participation.
If the organization also honors this attitude, the result is that we bring a great memory of that race and this weekend ...
I want to thank first to all who helped with this project, the Foundation San Joan de Deu, Associations Catalan and Valencian Rett Syndrome, the Gran Hotel Havana , the manager of Ofimaquinas.com, the group Reggae Microguagua to Merce, Estela, Sergio Saez, Helen, to all who in one way or another have supported us, my family we still race after race, the camera of this video, but I was 42 kilometers short made with the help of my good friend Jose, flew him around the city .... "Gracies Jose, this race will tambe per els teus"

The race continues .....

Maria makes the half marathon Petrer

Last year, the environmental organization Petrer Marathon, tube great detail with us, we not only welcome at the event, but that also we were assigned the number 1. Well, this year, we were invited to the race, as was the speak second year we participated, we were assigned the number 2 back.
This act along with the tremendous reception and hospitality we received make this test one of the most important calendar year, and from here I recommend to anyone who wants to have a good day and enjoy a demanding career.
As for the chronic test, well, since we are one in the family but it costs us a little more time to move everyone, and that was the reason we came to the race just in time more than ever, to the point that was reaching the end of the peloton of participants, and turn out, not if it was coincidence or that the organization was waiting for us.
The test discoursed by the usual circuit, counting on the flats, has few, always uphill or down, which makes the miles pass quickly. When we realized we had already done three laps and we entered goal.
Most important was the recognition that over the years we receive, besides the company of friends who live in the area, and not lose this opportunity to be together.
Over time, I think the important thing is that Mary and I realizemos either test, or so kilometers, more or less hard, if not her, since her car is transmitting.
Today Rett Syndrome is a little less unknown.
Finally, you have the video of the race, for you can enjoy it as much as We covered us. Thanks for always being there.

Josele and Maria ...

LAW OF DEPENDENCE

Maria, Cristina y Dani

Maria, Christina and Dani

Hi, as you all know some years ago passed a law that many need, and that is full of good intentions but few results. Here in Valencia, that Maria is a beneficiary of that law, fill the application in June 2008, and well, I can say that a year ago, and we have nothing or almost nothing.
This year has past, we have been visited by a social worker from the Department of Social Welfare, I make a favorable report, a visit from a social worker by the City, he described Mary as Great Dependent, and referred the report back to the Department of Social Welfare, where within three months should have issued a valuation report, to continue with an endless process.
Well, dated March 23, 2009 came the report of the Town Hall offices, and this is the date from Conselleria not know anything, or whether the three months that they are established, I have jumped.
What else we have to wait? if the time that the administration is created, already in itself excessive, they are popping themselves .... I can say ....
Maria has a disability of 87% and needs attention every day and every night but it seems that they have to apply the law, all they can delay. We know that after this procedure will be others that will surely like this, so maybe, and hopefully after a couple of years or three of your request, we began to see light at the end the tunnel.
Best of all this is that the media are the politicians saying how good they are and what help this group of people that they live a life that does not deserve anyone and we already have enough of ours to us to share in an administrative delay not deserve.
On behalf of Maria, just ask one thing LAW THAT APPLY NOW

Maria and Josele ...

CARING MORE THAN EVER ...

Hi, few days after the charity concert, I called to comentarme the details of that day. I was told it was a great success, not only did many people in solidarity with Rett Syndrome went to that concert, but it also authors who acted in that event is in solidarity hizieron, as none of them would be paid in some way by the acting. This makes us think that perhaps in the not too distant future we can attend another concert, if it is more massive, have a place where all those who in addition to the sport, have other goals in life.
Thank you for everything you have done, first authors of the concert, Fernando Bas, Linda Franceschini, (LINN) and Gilbertástico to all who came to watch this show so special, all members of Air Nostrum, and of course a lot of people that I have to thank both, members of Blue Line Solidarity.
Thanks Jack.

PS-I attached the blogs of authors, if you want to visit, and thank them.

LINN

GILBERTÁSTICO

Maria and Josele

CREATURES FROM ANOTHER PLANET, by Elizabeth Pedrosa.

portada_llibre Hi friends, last April 2 was the presentation of the book creatures from another planet, written by Elizabeth Pedrosa, mother of Gina, girl with Rett syndrome.
Elizabeth has written a book about the process that has this disease, the long road we must travel from doctor to doctor, from consultation to consultation, how we sometimes take for parents hypochondriacs, and how to get a final diagnosis, that despite being so hard, makes us relax and know that I finally have our children, and so to get to work to make them as happy as possible.
When I pause between lines of this book reminds me, unfortunately I feel like history is repeating itself, as we have lived, not the least difference to what they have suffered in other homes. As if life itself was not complicated enough, and we are even more complicated for us.

However, we must always pull forward, and that Elizabeth is doing very well, has assigned all copyrights of this book to finance an ambitious project that is taking place from San Joan de Deu Hospital, where will investigate this syndrome, and as to somehow alleviate the terrible consequences that these children endure living in a body that can be controlled.

I can not say more than to invite you to buy this book, read it, imagine what someone might think you have to live this disease closely, very closely, because that only means we will be able to know and understand what this syndrome. That's the only way to beat us in the future ....

NOTE-If you do not find in your standard library, leave a comment in this post, and I will answer where you can find it. Thank you for your cooperation.

Maria and Josele ...

131 km SOLIDARITY AGAINST CANCER.

> Hello friends, I will tell the next project we are going to join Mary and me. On the 9th of April, began the 131 km Cancer. So suddenly sounds a little weird, but it is a great idea of ​​the club Blue Line, and which will staged a march that will cross the greenway with the black eyes.
Pursued by this gesture to raise funds to donate to the association against cancer, specifically the children's home in Valencia.
This journey takes place in stages, about 20 km or so, and during the Easter holiday period. Steps out of the most emblematic municipalities, and is intended to promote the practice of athletics, as well as raise awareness about people with a wealth of history, and that once united the city of Teruel and Valencia by road.
The project is certainly exemplary, and we will accompany the caravan of runners in one or more stages, as we allow the physical condition of Maria, or not, during the tour, if all goes well.
I invite you to participate in this journey in some miles, or at all, at some stages, or all, would be very good for those 131 K Cancer are the 131 K of Solidarity and support for those people who unfortunately suffer a disease that should not exist.
The way of working is very easy, and in various ways, I attached the link where is all this information, I think the reason it deserves.
Courage, and join us in these 131 km The cause deserves it ...
INFORMATION
WAYS TO HELP
In case you are in any doubt as to their intended the funds raised by this case, look at this video then words. VIDEO OF SOLIDARITY 131 Km CANCER <

MISSING 32 DAYS

Maria y Josele

Maria and Josele

Hi, after 10 K, and begin to make this new car miles we have thanks to the team BLUE LINE, let's give Mary a new goal, one that means so much to us, MARATHON VALENCIA 2009.

We have been talking to the organization, and provides authorization for the mythical test, a gesture that honors them, and also will manage all the details so that we do not have any problems during the race, so if all goes well we have an appointment the next day on February 22 at 9 am, I invite you to come and watch the race, and give encouragement to people who participate in it, certainly in the last few miles are very helpful. Thanks to the organization for help, we will be in goal ...

Josele and Maria ...

Career information

Hello, my name is Maria

María | Mi Mundo Rett

Mary | My World Rett

Hello, my name is Maria.

I was born in Valencia, on March 27, 1999, after a perfectly normal pregnancy and normal delivery. My first few months of life, were among novice cottons of parents who gave me everything you could need. My mother worked in a nursery, and that was fine because she always went with her everywhere, even to work.
Began my first words: mama, papa, tetetaun (which were stuffed animals), gave kisses to all that approach me, for I am very affectionate. I liked that I balanceasen in a small swing we had at home, and played a lot in a blanket of those many things that made noise, but I think my parents that the noise did not like much.
We used to go out a lot, especially the mountain, because my parents were climbers and known many very cool places to spend the day in the countryside and fresh air. We had a backpack to carry these children, in which I was great, seeing everything, and when I got tired I fell asleep, then waking up in bed with my parents next door.

Gradually I grew up, knowing my family, that ... there are many I have guys everywhere, cousins ​​who can be my parents, is a little confusing, because my father's last child of eight older brothers, and all, to have their children, family means a very, very large. Each time we met the paella on Sunday, I spent the day arm in arm, the truth is that it went very well. My Aunt Amparo told me it was very good, and I removed the children snack in the nursery of my mother. There is also the family of my mother, though less numerous, they also love me very much, for I am the first grandchild, and you know ...

Everything was going great, it was a normal girl in an ideal family, but one day at 18 months or so, I began to feel strange, not controlled my hands seemed to move by themselves, I looked at them with a look of surprise, and could not do anything to stop them. A few days were more violent movements, I put them in my mouth and the bit I did not want to, but not for me to hurt myself, I got angry a lot, I was very nervous, and I bit more and more. If I caught the arm also bite, me, or who had me in his arms at the time, did not know what was happening.
Stop sleeping, reaching only two hours sleep all day, stop walking, talking, take things with my hands, to recognize my family, the same who also had treated me, my parents did not know what to do, were desperate .

From this time began a period of my life and those around me do not want to describe, as is full of long lines at doctors, medical hardships, serious problems with my health, so completely changed my life , stop being myself. At home we lost the joy ...

It took two long years very bad, full of crises of all kinds, to try different treatments, the worse it was, I had my sister, Cristina, I already had three years, the truth was like a gift for everyone. Things started to go better, I matched with medical treatment, and today I am a little better, I can not stand up, do not control my body, but to smile back, we have learned to live with this problem, and me with my take me to cart around, people like me very much, and I have many friends at school, until I go to run with my father, and sometimes I run with it.
Now we are all a little better, and very happy, because I have a little brother, I have wanted to see ...

Maria ...

Valencia Half Marathon

img_4387

Hello, here begins what is the end of a story that had not, in my view, another way to finish. In the end, Maria if he participated in the Half Marathon of Valencia, and as you can see, nothing happened, no incident has occurred, for a car with me posture throughout the test, giving encouragement to everyone who adelantáramos , everyone who saw us, they had no expression of the mood that could breathlessly say.
We leave the past, and gradually the race was spacing, and we started to get our rhythm, so we spent the entire test ahead of runners in the end, we entered discreetly goal, but we ... time to end , well it does not matter, what matters is that Maria is a little more about just that, a girl who has less and less barriers in life, the life that he lives with a disease that should not have anyone ...
Thanks to all who have somehow interfered with this car now keep rolling and keep doing it in the future, because we still are many barriers to overcome, goals to be crossed, and hope you are with us.
Here is the video of this race, I hope you like it. See you at the next goal ....

Josele and Maria