Many people ask what is #CocoFishGo?
When we finally discovered the cause of Chloe´s disease and that it was previously unknown we were Amazed!!!
When we begged and pleaded with the doctors to keep searching, doing tests and biopsies to chronicle her DNA during the phases of her disease it wasn’t out of stubbornness it was because we had learned over the years the the objective had to be: "Find the cause of the disease” Only then could we treat it and stop the neurodegenerative process.
Thats why after the lethargic and surreal feeling we felt after the calls that afternoon in March 2018 form Dr Matilla (IGTP) and Dr Posadas (Hospital Carlos III) informing us that a mutation in Chloe´s VPS13 D gene was causing her disease, we asked ourselves again… “Now what?"
Probably the worst part of the revelation was finding out that there were only 12 cases worldwide, no government, pharamaceutical company, scientist, lab… nobody would dedicate any resources to saving Chloe, no return on investment. Diseases this rare are called “Orphan Diseases"
The fear crept in, panic really. For weeks mind and heart were frozen, we were lost again. Like the not knowing what was stealing Chloe´s life.
When I got the call I had felt touched by heaven, the eternal warm light of happiness it was the end of a 7 year struggle and a victory!! Words don’t describe it but then suddenly…. “now what?"
After a few weeks my phone rang, just a regular May afternoon… It was
“Can the 4 of you come to Barcelona? we need to meet and speak.” So of course we went full of questions, fears, confusion and torment. Just as excited as we were scared, we walked again against the current holding our breath and threw some clothes in a suitcase along with all our hopes and left.
At the German Trias y Pujol hospital Mark met us. He was a memeber of Dr. Matilla´s research team and we had met him on a previous visit. He had been working on Chloe´s case since her first genetic study 5 years ago. He took us to the Lab in the l IGTP where Dr. Matilla sat us down and explained his plan. He was going to CREATE A CLINICAL STUDY JUST FOR CHLOE!!!! Over the moon!!! A light at the end of a 7 year tunnel!!!!!
YES, there was a scientist in the world with the knowledge, experience and infrastructure to cure Chloe and it was Dr Matilla. It wasn´t just a hope or mirage, there was a brilliant scientist (internationally renowned geneticist) who was willing to dedicate his time and the resources of IGTP to help Chloe. All of a sudden we could breathe again.
The project is almost ready, Dr Matilla and his team have already begun the work months ago. Dr Posadas from Carlos III is coordinating with them to make the miracle.
The first phase involves testing on zebra fish and Chloe´s nickname: COCOFISHGO =)