Valentina, the newborn from Los Barrios with a singular illness in Spain, turns one yr previous: “They gave her 48 hours to stay”

Today Valentina celebrates her first yr. But this child from Los Barrios (Cádiz) can’t blow out her candle. She has a tracheostomy, eats by a tube, and desires mechanical air flow at night time. When she was born she was barely given 48 hours to stay. That is why at the present time is so particular for her household. “It is an achievement to have come this far,” acknowledges her mom, Cristina Gutiérrez.

With her he has discovered to stay daily. The little woman has an ultra-rare illness whose identify was tough for her to be taught and which, now, this mom has engraved on hearth: congenital hypomyalizing polyneuropathy kind 3. The lack of a protein that surrounds the nerves, myelin, signifies that she hardly has any mobility or musculature. “Not even to pump the chest,” says Cristina.

There is not any therapy or treatment, and his case is the one one in Spain. They don’t attain 30 on the earth. “I take a look at her and marvel why he needed to contact her.” But Cristina is aware of {that a} thousand instances, she would undergo the identical factor once more, so long as she had her. “Definitely”. Despite the arduous street they’ve lived and the unsure future that lies forward. “It is unknown what the life expectancy is. We solely know that from statistics, the bulk die in childhood from respiratory issues, ”she factors out.

Their solely hope: a 50,000-euro examine from the Pablo de Olavide University

This household is just not resigned and, in entrance of the birthday candle, a single want that has a value: 50,000 euros. It is the cash {that a} group of researchers from the Pablo de Olavide University in Seville wants to hold out a examine on Valentina’s case. A month in the past, Professor José Antonio Sánchez Alcázar, who’s main the investigation, opened up this ray of hope for the household.

As the professional in uncommon and ultra-rare ailments himself explains, it’s about “modeling the illness within the cells derived from the affected person and in search of therapeutic options with medicine which might be in the marketplace and whose results are already recognized.” The goal is to hold out fixed assessments with these medicine to discover a resolution that slows down the development of the illness and, in the most effective of instances, cures it.

“We do not understand how a lot time he has left”

A life alternative for Valentina who retains her mother and father in “fixed pressure” to get cash they do not have as quickly as potential. “We have even thought of promoting the home however now we have to stay someplace,” explains Cristina, who months in the past needed to take go away for particular instances like this, given the impossibility of being accepted in a day care middle.

She spends her days organizing raffles, handing out piggy banks, and attending occasions. A time that he want to dedicate absolutely to her however that, with out the assistance of her administrations, he can’t. “We do not understand how a lot time she has left and now we have to take a position it in getting the cash towards the clock. I am unable to even take pleasure in it. It’s not truthful that hundreds of thousands are invested in different issues and nothing within the lifetime of a lady,” laments this mom who, nonetheless, has no phrases to thank the solidarity of all of the nameless people who find themselves contributing their grain of sand. “Valentina belongs to everybody,” she says.

May 29. There are balloons, a cake and completely satisfied birthday is sung. Valentina seems at every thing by eyes lively and a shy smile on her face. Just a few months in the past she did not even gesticulate. They are small steps that she achieves because of the each day physiotherapy periods with which they attempt to fight her hypotonia (low muscle tone). Valentina does not hand over, neither does her mother and father. A yr in the past, she was solely given hours to stay. Today, this little warrior reveals that she goes to maintain preventing and hoping that her birthday want comes true.