Eleven-year-old Chloe, from Marbella, suffers from a rare degenerative disease, and tragically paralysis is, at present, her predicted fate. In solidarity with Chloe's cause, fellow students at Marbella Montessori School will be walking from San Pedro Alcántara to Puerto Banús on 23 September. The pupils hope to raise funds and awareness of their classmate's rare disease through the charity event.
Chloe is one of only 12 cases worldwide known to suffer this disease. From the age of three, Chloe's muscles and nervous system have been progressively deteriorating, due to a congenitive VPS13D mutation in a gene. While extreme fatigue and aches are just two of the symptoms which Chloe endures , the eventual loss of mobility seems inevitable.
Investigation is under way at the Instituto de Investigación Germans Trias i Pujol (IGTP), Barcelona, as Dr. Matilla is endeavouring, in coordination with Dr. Posadas from the Instituto de Investigación Carlos III, to find a treatment which would curb the development of the disease. Progress has already been made, as, only a year ago, the cause of the disease was still unknown.
This research project comes at an extortionate cost, however, and, as a cry for help, Chloe's mother, Jorgelina, has launched a crowdfunding campaign on GoFundMe (Proyecto-Chloe-Cocofishgo). There is still a long way to go until the 200,000 euro target is achieved, yet Jorgelina pleads for people to donate, as the first stage of the project can only be started once 25,000 euros have been raised.
The Montessori students are not alone in their endeavour to help Chloe, however, as well-known faces from the world of entertainment and sports have also expressed their support. Personalities such as Alex de la Iglesia, Edu Soto, Santiago Segura, Aitana Sánchez-Gijón and Pablo Motos are among those who have spread the hashtags #InvestigacionParaChloe and #CocoFishGo.
For more information, visit www.investigacionparachloe.org.