By John Smith • 25 February 2020 • 15:53
Chloe and some of the professionals trying to help
Credit: Chloe’s Facebook
CHLOE is an 11-year-old from Marbella who suffers from a disease that is so rare that only 12 cases are known anywhere in the world with just her in Spain and at the moment there appears to be no treatment available.
Now identified as being caused by a problem with a gene known as VPS13D, it affects her in many ways, causing irreversible damage to her muscular and nervous systems so that her hips, legs and speech are affected.
It took seven years of investigation to even identify the cause of the problem and with just one case in Spain which is hers; there is little encouragement for the local health service to try to find a cure although doctors are trying to help.
The good news however is that she has not been abandoned and the German Trias and Pujol Institute, led by a Dr. Matilla, has created a research project to stop the neurodegenerative process of the disease that affects Chloe.
They are now coordinating with Dr. Posadas and the Carlos III Institute so whatever they discover can also help those other few people who suffer the ravages of this rare disease.
The anticipated cost of the project which is estimated to be in the region of €200,000 will take at least two years to complete so the family of this happy but now 75 per cent disabled little girl are trying to raise funds in order to save her life.
The Breathe Restaurant in Puerto Banus is committed to assist different causes in the Marbella area and on Saturday March 7, it will be hosting a major gala to raise funds for Chloe and her appeal.
Guests will enjoy a three course meal and welcome glass of champagne and tickets which cost €90 per person can be reserved by emailing [email protected], calling 952 036 494 or sending a WhatsApp to 697 370 256.
All of the money raised by the appeal for Chloe goes directly to the research centre and if you can’t attend the gala but would like to help visit https://www.gofundme.com/f/proyecto-chloe-cocofishgo to make a donation.
To discover more visit www.investigacionparachloe.org.
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Married to Ophelia in Gibraltar in 1978, John has spent much of his life travelling on security print and minting business and visited every continent except Antarctica.
Having retired several years ago, the couple moved to their house in Estepona and John became a regular news writer for the EWN Media Group taking particular interest in Finance, Gibraltar and Costa del Sol Social Scene.
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