Little boy has ‘wasted away’ after chickenpox ‘unlocked rare disease that can cause blindness’
But the virus triggered an inherited degenerative disease called Spinocerebellar Ataxia Type7 that had been lying dormant in the youngster
A FOUR-year-old boy is wasting away in front of his parent's eyes after chickenpox triggered a rare genetic condition.
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.
Because the youngster’s immune system was weakened by the virus, the degenerative condition that causes the central nervous system to breakdown was able to attack.
Tiago's father, Marvino Gouveia, 39, is a carrier of the disease and has watched his mother, sister and niece battle the illness.
The condition causes the breakdown of muscles in the body, leading to the loss of motor skills and speech and, in some cases, blindness.
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.
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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.
"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 diagnosed with the rare condition and since then he has lost the ability to walk or eat and it has also affected his speech.
It is an inherited condition caused by a defect in the SCA7 gene, located on the third chromosome.
The youngster has also developed nephrotic syndrome, a condition that causes kidneys to leak protein into urine, which has caused him to struggle even more to keep weight on.
The condition affects just one in 50,000 children according to the NHS.
He is due to undergo a gastrostomy operation on April 4 at Evelina London Children's Hospital to help stop his plummeting weight.
The surgery means he will have a feeding tube placed in his stomach to ensure his body is getting the vital nutrients it needs to survive.
What is spinocerebellar ataxia type7?
Spinocerebellar Ataxia Type7 is a rare genetic condition that impairs the central nervous system responsible for carrying messages to and from the brain.
It causes degeneration of the part of the brain responsible for movement and balance.
It can also cause muscle degeneration and blindness.
Those who have the disease suffer from slow eye movements, changes in sensation and reflexes, loss of motor control, unclear speech, difficulty swallowing.
When it affects children the onset is rapid and aggressive.
There is no known cure for the condition.
Marvino’s mother, Latifa Goveia 71, lost her eyesight and her ability to walk without the aid of a stick when she battled the condition.
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.
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.
They hope a 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, but there is no known cure for the disease.
Marvino, originally from Portugal, 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.
"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."
To donate to Tiago you can visit his
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