Carolina Purpurina arrives in Córdoba in her fight against leukodystrophyDANIMANTIS PHOTOGRAPHY
“Carolina Purpurina. Brilliant adventures on wheels”, The book that seeks to raise funds to bring a pioneering clinical trial against Leukodystrophy to Spain, will be presented, both in Córdoba and in the town of Peñarroya-Pueblonuevo (Córdoba) during the next few days.
This is a story written by the 9-year-old girl. Isabel Plantinet and inspired by his older sister, Carolinaa girl with Leukodystrophy TUBB4A, rare neurodegenerative disease caused by a genetic mutation. It is based on Carolina’s real life, but, as the prologue of the book advances, “It is not just a story of disability, it is a story of ability, a universal story for children and adults”. The objective: to give visibility to this reality while raising funds for research against the disease in our country.
Thus, next Friday the 14th, the author of the book, her mother, Laura Rivera -editor of the story-, and Carolina herself, will be in the Cervantes Maristas School of Córdoba at 11 in the morning. In the afternoon, at 6:30 p.m., the presentation of the book is scheduled at the headquarters of the Singular Future Foundation of Córdoba, within the framework of a family workshop. This is a foundation that works for people with intellectual disabilities and their families.
Likewise, on Saturday, June 15, at 11:30 a.m., the presentation will take place at the Center for Entrepreneurial Initiatives (CIE)located in the town of Peñarroya-Pueblonuevo (Córdoba).
Research against a serious and rare disease
Like Carolina, the protagonist of the book, some 300 boys and girls in the world are diagnosed with the disease. Leukodystrophy associated with the TUBB4A gene, located on chromosome 19. In Spain there are only 9 recognized cases, although it is estimated that there are more undiagnosed cases given that the genetic tests necessary to detect it, in many cases, take months or even years to perform.
As of today, 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, within the Children’s Hospital of Philadelphia (PA). In it, since 2013, Dr. Adeline Vanderver has been carrying out research, now at a very advanced stage, that would mean paralyzing this neurodegenerative disease with the consequent improvement in the quality of life of affected children.
The clinical trial has several collaborating hospitals in Europe, among which the Sant Joan de Déu Hospital in Barcelona stands out. From there, Dr. García-Cazorla is in contact with the reference neuropediatricians of each of the children diagnosed in Spain and has brought together all the medical tests that have been carried out since the diagnosis of the disease in each of the children. The hospital needs an annual budget of close to 20,000 euros to continue advancing with 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 collection of the book “Carolina Purpurina” and the recruitment of new members and donations from companies.
An innovative book with several awards
Published by the Letra Minúscula publishing house, the book has been translated into English and French, and is the fruit of Isabel’s love for her sister Carolina, who was born with this rare disease. Isabel, with admirable precocity, signs the work with her mother, who has helped the little girl edit and shape the adventures of this book inspired by real situations experienced with Carolina and narrated from a positive perspective, full of light and of hope. The work, which has been among the best-selling children’s books on Amazon in record time since its arrival on the market just two weeks ago, consists of 12 chapters, all based on some anecdote from Carolina’s real life and includes an annex with real photos of each of those moments.
Before being included in this book, Isabel’s stories about her sister made her the winner of three first national literary awards: the Milton Literary Contest for Little Writers in the English language (June 2023), the FECOSVA Christmas story contest in Valladolid (December 2024) and the short story contest on the occasion of Women’s Day in Madrid (March 2024).
The authors want to create a series of books starring Carolina Purpurina – that’s what they call her at home because Carolina loves everything that sparkles – since, as Laura Rivera Casares, Carolina’s mother and co-author of the work with her daughter Isabel, comments , “There is very little children’s literature starring characters with disabilities and these boys and girls with such a unique life can, and should, have as normal a childhood as possible, respecting differences and what makes them unique. Our project is, above all, an adventure book, a fun story that will reach everyone, with and without disabilities. The illness is in the background, but it is not the main theme, it does not define the protagonist. What we would like is to make a saga with Carolina’s adventures and for it to reach as many people as possible, as well as for educational centers to also take these types of initiatives into account to integrate them into their reading plans and normalize these situations.”.
The authors of the book They are mother and daughter and share their love of reading and writing. When the opportunity arises to unify and publish Isabel’s textsis Laura -graduate in Law but lover of Journalism- who takes care of transcribe, correct and structure the manuscripts inspired by his eldest daughter. The editing process of this book has allowed them to enjoy special moments of great complicity. Together they have chosen the typography, the cover design and have examined numerous sketches until selecting the final illustrations. All of these sketches are available on the Carolina Purpurina website so that boys and girls can download them and color them.
Isabel and Lauranext to one’s own Carolina, are carrying out a book presentation tour that began in Madrid on May 31 to continue through Valencia and Manises (June 10 and 11), Seville and Marchena (June 12 and 13), Córdoba and Peñarroya-Pueblonuevo (14 and June 15) and Valladolid (June 22). “Carolina is looking forward to signing books for her readers, but since she doesn’t write very well, we have made her a stamp with a very special illustration in ‘phosphorescent’ pink, so that she can also dedicate copies”says Isabel Plantinet.
Carolina Glitter.
TUBB4A Foundation
The TUBB4A Leukodystrophy Foundation was born by the will of Spanish families affected by this neurodegenerative disease. In Spain there are 9 known cases, although it is believed that there are more undiagnosed cases. The mission of the foundation is to find a cure for Leukodystrophy associated with the TUBB4A gene, with the vision of a world free of neurodegenerative diseases that affect childhood. To this end, the foundation works to make the disease visible and raise funds with the aim of supporting research applied to the development of gene therapies.
More information on the webpage https://www.fundaciontubb4a.org/
ALS Association Spain
ELA Spain emerged in 2001 from the meetings that families held in the library of the Hospital Universitario del Niño Jesús in Madrid, in which they sought the support of other people who, like them, were going through a very complicated situation. Since then, the association has worked to help those affected by this group of rare neurological diseases of genetic origin. The association joins forces to promote research and care for affected people. ELA Spain has donated more than 500,000 euros for research against the disease, has helped the development of clinical trials and promoted knowledge of the different leukodystrophies.
More information on the webpage www.elaespaña.com
