Four-year-old boy wasting away after chickenpox 'triggers family curse'

By YOU
10 April 2017

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

A four-year-old boy has wasted away to almost half his expected weight before his parents' eyes after a bout of chickenpox unlocked what they believe to be the "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.

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

Tiago's father Marvino (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.

Poor Tiago's body has deteriorated so badly that he weighs in at just 10,88 kg – half the average weight for a four-year-old boy of 22 kg.

PIC FROM MERCURY PRESS (PICTURED: TIAGO GOUVEIRA IN HOSPITAL IN JANUARY 2016) 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. But the virus triggered an inherited degenerative disease called Spinocerebellar Ataxia Type7 that had been lying dormant in the youngster. SEE MERCURY COPY Tiago Gouveia in hospital. PHOTO: Magazine Features

Marvino said that this is the fourth generation that has suffered 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. 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," said Marvino.

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.

PIC BY MERCURY PRESS (PICTURED: TIAGO GOUVEIA, 4, FROM LONDON, ON A TRAMPOLINE. HE HAS UNLOCKED THE INHERITED FAMILY CURSE DISEASE AFTER HAVING CHICKEN POX.) 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. But the virus triggered an inherited degenerative disease called Spinocerebellar Ataxia Type7 that had been lying dormant in the youngster. SEE MERCURY COPY Tiago Gouveia from London. PHOTO: Magazine Features

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

Now, finance worker Marvino and his 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.

PIC FROM MERCURY PRESS (PICTURED: (L TO R) ROSA, DAD MARVINO HOLDING HIS SON ANDRE AND TIAGO ON HIS MOTHER ROSA'S KNEE) 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. But the virus triggered an inherited degenerative disease called Spinocerebellar Ataxia Type7 that had been lying dormant in the youngster. SEE MERCURY COPY Dad Marvino holding his son Andre and Tiago on his mother Rosa's lap. PHOTO: Magazine Features

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

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.

"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," said Marvino.

"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. This giveS 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.

SPINOCEREBELLAR ATAXIAS TYPE7 FACTS

  • Spinocerebellar Ataxia Type7 symptoms can include: problems with balance and coordination 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.

— Magazine Features

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