Perpignan: Tino, 8 months, life is only one breath, need help – 05/02/2019



His life is hung by a thread, or at least breath. He received a behavioral genetic disease with only three cases in France and 175 in the world, the boy, hospital in the parent-child service in Perpignan hospital, through it, surrounded by care and love.

"After testing products, rigorous care at Montpellier University Hospital and once they have been finalized, we've got 15 doctors with us, initially that we both have a & # 39; the behavior of the gene that was in charge of Tino's illness, and not to kill a son for a long time! They spoke about a month, then two and so on … "

"Today our baby is just 8 months old (he was born on June 3), and against all he looks like he is still here, he is a brave little man in his and we are sure he is fighting with his power against the evil that he has carried on since he was born "a & # 39; trusting, faithful and badly ill-treated, his parents: Lydia Lapurta and Gerard Bernardini, of the Corsican decision both.

The worst type of disease

The walls of his hospital room are decorated with pictures of the oldest four brothers and sisters and the strawberries set up on his small chrib and, Trying to be happy. But many pipes and scrutiny are always tied, and that adds mask oxygen, and it's hard to forget that there are sad problems for a sick baby.

"Tino suffers from the most severe type of Syndrome Zellweger," says Lydie, "a rare disease that causes muscle hypotonia, frequent attacks that require regular oxygen, and as a sink, and as Without the gastric tube. To get food … It's so weak and weak that the least cold can succeed quickly, we know that our little angel can not get a # 39 Keeping his head, sitting or walking, but we do not let us get out of the stability.

To be at his side

This means that their relatives live naturally every day. By staying in Sainte-Marie in a small garden with a garden Bernardini will; turn on the morning and evening at the youngest brother's bed. If Lydie does not work, Gerard needed to hamper his professional position.

"I closed several offers of contracts to take myself to Tino who needs our love, presence, and feeling at her," said the father with a little smile. Since the company was created "Hope for Tino" and a Facebook page through which Lydie and Gerard put a pot, a lot of supporters left from across France and abroad. Fairness and balm to the heart for this broken family.

What's the Zellweger syndrome?

Zellweger is not very rare (currently 175 around the world), a controversial disorder (present at birth), marked by a reduction or lack of peroxisomes (cell structures that & # 39; eliminate body of poisonous substances) in cells. gold, the breasts and the brain.

It is part of the family of genetic diseases known as leukodystrophies affecting the growth of myelin house (the fatty cover, which affects the upper windows of the brain) . This genetic disease is drawn according to its "automated" model (it must have the genitive comparison of each parent to give the child the disease).

These are the cells of the aggregate, the habitats and the worried brain. The most common features include large gold, high iron levels and copper in the blood, and visual disasters. Symptoms of muscle and abusive illness may potentially move in symbols at birth. Other symptoms may include unwanted clothing ideas, to & # 39; stimulate and / or swallow emotion, epileptic holdings, and incapacity.

Gastronomy berries may also be. Unfortunately, so far, there is no general cure or remedy. Tenancies should be stopped to avoid problems such as emergency arrest and respiratory disorder. Other treatments are designated and supportive.

(SOURCE: THE INDEPENDENT)


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