Life

By Liam Geraghty


A four-year-old boy has wasted away to almost half his expected weight before his parents’ eyes after a bout of chickenpox unlocked a ‘FAMILY CURSE’.

Tiago Gouveia, from London, was a healthy toddler up until the age of three when he was exposed to the chickenpox virus while playing with his cousin.

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But the virus triggered an inherited degenerative disease called Spinocerebellar Ataxia Type7 that had been lying dormant in the youngster.

Tiago’s father Marvino Gouveia, 39, is a carrier of the disease and has seen his family ‘cursed’ after having to watch his mother, sister and niece contract the illness.

The condition causes the breakdown of muscles in the body, leading to the loss of motor skills and speech as well as blindness in some cases.

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Poor Tiago’s body has deteriorated so badly that he weighs in at just one stone 10lbs – half the average weight for a four-year-old boy of 3st 8lbs.

Marvino said: “This is the fourth generation that I have had to see my family suffer from this illness.

“It is a curse because actually my mum said that nothing had ever happened before her.

“Since then, I have seen her, my sister and her niece suffer with the disease.

“After contact with the chickenpox virus, we noticed that Tiago had started to lose balance and he was falling over a lot.

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“He was diagnosed and then started to get worse until eight months later he could not walk at all.

“We feel like this condition is bringing him down in age – he is back to being like a two-year-old boy now when he is four.”

Tiago was taken to hospital in April 2015 after his parents noticed that he kept losing balance.

He was then diagnosed with the condition and since then he has lost the ability to walk or eat and it has also affected his speech.

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It is an inherited condition caused by a defect in the so-called SCA7 gene, located on the third chromosome.

The youngster has also developed nephrotic syndrome – a condition that causes kidneys to leak protein into urine affecting just one in 50,000 children according to the NHS – which worsened his weigh issues after the ataxia affected his ability to eat.

He is due to undergo a gastrostomy operation on April 4 at Evelina London Children’s Hospital to help stop his plummeting weight.

Marvino has suffered this agony before after watching his mother Latifa Goveia, 71, lose her eyesight and her ability to walk without the aid of a stick back in his native Portugal.

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Now, finance worker Marvino and full-time carer wife Rosa Gouveia, 38, as well as other son Andre Gouveia, 11, are hoping to throw Tiago a lifeline by fundraising for stem cell treatment.

The trio have been devastated by watching the young boy lose the ability to walk or eat over the last eight months.

Marvino’s Geneva-based sister Canisia Brunier, 52, has also been struck down with the disease while her daughter Melissa Brunier, 21, has been left wheelchair-bound and almost blind.

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But the dad-of-two is facing new pain watching his son’s health progressively decline as the earlier the symptoms of the rare condition display themselves, the more severe they appear.

He now insists that doctors’ claims that the stem cell treatment, which is not available on the NHS, could improve Tiago’s condition to such a degree that the symptoms could be reversed.

Marvino said: “It is very hard to watch what is happening to Tiago because we have videos of him playing and walking.

“We have seen all his generation grow up over the last two years and at the same time he is losing skills and we know this will just continue.

“We could not sit around and watch that happen so we decided we have to do something.

“We have spoken to doctors and clinics about stem cell treatment and they have been positive that it could even reverse the symptoms.

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“This give us and Tiago hope and we have to stay strong for him.

“We also have to stay strong as a family because it is hard to see him like this and his brother often has to go into another room because he cannot bear to see Tiago like this.”

Tiago’s family are currently fundraising for stem cell treatment for Tiago, donations can be made here.

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SPINOCEREBELLAR ATAXIAS TYPE7 FACTS

– Spinocerebellar Ataxia Type7 symptoms can include: problems with balance and co-ordination and slurred, slow and unclear speech (dysarthria), according to the NHS.

– Other symptoms are difficulty in swallowing (dysphagia), muscle stiffness and cramps, loss of sensation in the hands and feet (peripheral neuropathy).

– Memory loss and difficulties with spoken language, slow eye movement and reduced bladder control can also be signs of the condition.

– SCA7 results in earlier age of onset and more severe symptoms as the gene is
passed down the generations, according to Ataxia UK.