“Our lives have new direction”

MUCH of Spain was glued to the television or radio hopefully clutching their lottery tickets as the children of San Ildefonso sang out the seemingly endless numbers for the El Gordo Christmas draw on Thursday, December 22.

Others, however, were listening out for another number, one given to them in a cause that could see them exchange their €10 donations for an apartment.

The property in question was donated by journalist and radio presenter Javier Cardenas.

The reason? He had been told the moving story of Mara, a 13-year-old girl with a rare illness called Idic15 syndrome, and her father.

As described in our previous article, Mara’s Valencian father, Miguel Angel Orquin Gonzalez, decided after losing his job during the recession to attend Valencia’s Faculty of Medicine.

After six years of hard work, Dr Orquin graduated with flying colours last year and is now in his first year of residency at Vinaros hospital and Benicarlo health centre.

Yet the doctor has a goal which is both personal and professional and goes much further than treating coughs and colds: to spend his life researching and working towards a cure, or at least better treatment, for Idic15.

In his second year at the university, the determined father proposed investigation hypotheses to the department of Biochemistry and Molecular Biology which surprised and caught the attention of the professors. The need for €123,000 in funding to continue investigations along these lines – discovered by Cardenas during an interview – led to the fundraising campaign which will today culminate in somebody winning a flat.

Yet whoever won the property (their identity has yet to be revealed), and an €8,000 cash prize to redecorate it to suit their taste, was not be the only winner. The real winners are Mara and her family and others who suffer the effects of this little-known genetic syndrome.

In the face of the doctors who claimed nothing could be done, this campaign to improve the lives of those with Idic15, could prove otherwise.

It’s far too easy to read about this type of case and put it aside, with no consideration for the fact that we’re reading about real people with real lives, who struggle on a daily basis to cope with the effects of crippling conditions.

Yet Dr Orquin and Mara are far from just names on a hospital list and for her father, Mara is everything. It may have been a long, hard slog but it has been more than worth it to try and improve his daughter’s future, the doctor told EWN: “It’s been a complicated path, with short term goals and a lot of effort. First an exam, then a term completed, then another exam… then suddenly you look back and realise you’ve really run a marathon, one tough, tiring step at a time, but we’ve reached the finish line.

“At the end of the day, your case is at home and the love you feel for your daughter pushes you to keep digging and investigating. From the very start of my studies I was excited to be learning about human genetics, but I couldn’t shake off the feeling that the authorities had abandoned us to fate,” he explained.

Hope is at the forefront as Dr Orquin continues to seek the remaining funds required to allow his investigations to continue. In the meantime, he hopes his hypothesis on improving cell function will remain as his ‘little legacy’ to families which, like his, share their lives with children born with Idic15. Children, he explained, who battle every moment of every day against biological barriers most of us cannot even imagine, yet teach us life lessons along the way.

“Every day I learn something from Mara and she learns something from me. I hate speaking of disabilities because Mara has managed to completely modify her surroundings and all these modifications have been good for our family, she has given our lives new direction and a clear goal,” this loving father ends by saying.