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“Carolina Purpurina. “Brilliant adventures on wheels”Jorge Jimenez
Carolina travels quickly and with a perennial smile in a wheelchair through the hallways of the Valdés Leal school in Seville. There are just a few minutes left until the presentation begins.Carolina Glitter. Brilliant adventures on wheels(Lower Letter) in this public center in the capital of Seville. Her sister Isabel, only 9 years old, explains to The Andalusian Post Office with great ease where the name of the book that will be made known to the educational community comes from: “My sister likes everything that shines. That’s where the idea of what I write came from.”
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My sister likes everything that glitters. That’s where the idea of what I write came from.
Isabel Plantinet. co-author of ‘Carolina Purpurina’
Carolina was born with a rare neurodegenerative disease, although it took six years until her parents achieved a diagnosis. “I saw my daughter in relation to children her age and I noticed things. We went to the doctor and he told us there was nothing. One day, when I was three years old, I went with her to the hospital and decided that I wouldn’t leave until they told me something,” says Isabel Rivera.
Rivera is co-author of this sales phenomenon on Amazon and mother of the protagonist of a fraternal storywhich ultimately is the love story between brothers and makes visible what the lives of these children are like and what “their adventures” are.
A book to raise funds for a clinical trial
These adventures, based on real events and with careful illustrations, are those that are told in a work that seeks to raise funds to be able to bring Spain a clinical trial of leukodystrophy. Like Carolina, 300 children in the world are diagnosed with this disease associated with the TUBB4A gene, located on chromosome 19.
Like Carolina, 300 children in the world are diagnosed with this disease associated with the TUBB4A gene, located on chromosome 19.
Today, as Laura Rivera explains, there is no cure for the disease and the hope is to be able to advance through gene therapies. The world reference center for progress against this disease is the Leukodystrophy Center from Philadelphia, in the USA.
Presentation of the book “Carolina Purpurina” at the CEIP Valdés Leal
Improve the quality of life of these children
In it, since 2013, research has been carried out in a very advanced state at present, which would mean a paralysis of this neurodegenerative disease with the consequent improvement of the quality of life of affected children, according to the press release from the TUBB4A Foundation, created by the affected Spanish families.
The clinical trial has several collaborating hospitals in Europe, among which the Sant Joan de Déu Hospital in Barcelona stands out. This hospital needs an annual budget close to 20,000 euros to be able to carry out the clinical trial. The TUBB4A Foundation has already donated 12,000 euros to the hospital on May 6 and hopes to be able to make new contributions thanks to the book’s proceeds. Carolina Glitter, attracting new members and corporate donations.
One of the nine Spanish cases, in Seville
In Spain there are only nine recognized casesalthough it is estimated that there are more undiagnosed given that the genetic tests necessary to detect it, in many cases, take months or even years to perform and are very expensive.
“The disease should be better known and diagnosed because It is not that there are few cases, it is that they are not diagnosed, because you need a genetic test that is often very expensive or there is a lot of pressure to have it done,” he explains.
One of them precisely in the school where this Thursday the book was presented, which these days travels through many of the cities and towns of Andalusia to publicize this disease and raise the necessary money.
Carolina’s mother explains that the tests to know the diagnosis are complex and expensive.
“We would be more and more strength we would have to get to get the attention of a laboratorywhen there are actually nine of us in Spain, well imagine who is going to pay attention to us, no one, but now they are not going to pay attention because this book is becoming a true phenomenon,” says Laura Rivera.
One of them precisely in the school where this Thursday the book was presented, which these days travels through many of the cities and towns of Andalusia to publicize this disease and raise the necessary money.
Carolina’s “crazy ideas”
To Isabel, this precocious writer who won several children’s literary contests, which led a publisher to notice her stories and decide to publish them. Carolina Glitter, His eyes light up when he remembers his sister’s anecdotes and “crazy ideas.” “For weeks, my mother had to carry her wheelchair up the subway stairs because the elevator wasn’t working. One day, at a water park, “My sister thought why not put a colorful slide like the ones there in the subway.”he remembers between laughs.
According to his mother, “it is exciting to see that the book is reaching not only children with disabilities but many others. The objective is to give visibility to the disease, but the good thing is that it is an adventure book is not a disease bookthat’s why it’s coming.”
Isabel Plantinet, co-author of “Carolina Purpurina”
Regarding this, Laura Rivera elaborates on the idea that “there is very little children’s literature starring children with rare diseases, and many times if there are they are very sad, with the patient as a victim. This, in the end, is our life .I have four children. We try to make our children happy and have a normal childhood. and above all that the brothers do not pay for the fact that you have one of the sick children. “We have a happy life with limitations, like everyone else.”
Glitter in the palace
One of the funniest chapters, which also has photos in the annex of the book, was the visit of Carolina, her sister and her mother to Queen Letizia at the Zarzuela Palace. Carolina was able to verify that royal palaces are not like those in fairy tales. Laura Rivera appreciates the support of the monarch and her involvement in the dissemination of this type of diseases.
Carolina, her sister Isabel and her mother, visited Queen Letizia in Zarzuela, and the episode is collected in ‘Carolina Purpurina’
