Jorgelina with Chloe and the family’s dog. :: J-L
A mother in Marbella has founded an association to fight for the rights of children with rare and unrecognised illnesses
For two and a half years little Chloe has travelled from hospital to hospital in search of an answer to the serious illness which has cut short her ability to eat, talk, walk and hold things. Just five days after blowing out the candles on her third birthday, the torment for her and her family began.
Not one of the numerous tests carried out in Spain, Argentina or the US has thrown light on the type of rare illness that has affected the little girl and that seems to be genetic in origin. The traumatic experience, both personal and economic, has impelled the mother, Jorgelina Borda, to create the first association in Spain that fights for the rights of sick children that cannot be diagnosed.
Bubblesanddreams.org, according to the statutes of the organisation made available to SUR, “will promote the rights of all children to obtain an early diagnosis from the public health service or private health institutions. Especially when the illness is degenerative, putting the health of the child before medical protocols, independent of where the child lives or the economic circumstances of the family”.
In August of 2011, Chloe, who is now five, was admitted to hospital with various symptoms that did not correspond to any specific illness but which were rapidly destroying her basic abilities. Since then, and by the sheer perseverance of the mother, Chloe has been submitted to various tests and treatments based on trial and error.
Chloe was born in Marbella on the 3rd August 2008. Jorgelina remembers how Chloe was quick to walk and talk, however in May 2011 the first problems arose. She started to dribble and each day her speech was more difficult to understand. Chloe’s left leg started to fold under her making it difficult for her to walk. By then she had also started to show extreme tiredness and was always taking ‘siestas’. The doctors looked for a brain tumour but couldn’t find one. They let her go home, advising Jorgelina to change their teaching techniques and get rid of Chloe’s dummy.
The deterioration in Chloe’s condition continued fast. She started falling over and choking on her food and drink. Jorgelina, who had just had another baby, Kaia, started on a tour of neurologists in Madrid, Philadelphia and Argentina. “Unfortunately the protocol for these types of illnesses is to do a series of tests and then await the results. For some cases this makes sense but we are talking about a child with rapid psychomotor deterioration,” she explained.
In February 2012, doctors advised that Chloe be fed on jellies, soups and porridge to avoid the risk of choking. Chloe had stopped talking “because she knew no one could understand her”. Nor could she walk, as she just didn’t have any strength left. Seeing their daughter getting worse, Jorgelina stopped the treatment. “I said that’s enough. It’s over. She’s not going to any more therapy because it makes her tired. I started to follow my own instincts, against my own family’s wishes.” Jorgelina gave up her job to care for her daughter and scoured books and the internet looking for similar cases.
Instinct guided her back to Philadelphia. When Chloe came back home she was taking Q10, a coenzyme used to treat Ataxia. Jorgelina had suggested the treatment to the doctors at the Hospital Niño Jesús in Madrid but with no success. “They didn’t offer it to me in the US either but I was desperate and I asked if they would try it and they did,” she explains.
While she was in the US she took the opportunity to consult another specialist renowned for treating brain damaged children. “I used this information with the Q10 and came up with a totally organic diet, rich in proteins and a dozen supplements expressly for reconstructing the brain, the neurological function and the acceleration of neuro -transmissions.”
Chloe is still under the care of the American and Spanish specialists and her condition has now stabilised. “We don’t know how it works but she is now talking a bit and has more energy although we still have to use the wheelchair for getting about.” Little Kaia has started to show the same symptoms as her sister and they are hoping that the eclectic cocktail will help her as well.
Jorgelina knows that there are still battles to fight, but she has come a long way. Through Bubblesanddreams.org she hopes to be able help others who come face to face with the tough world of rare illnesses.