A little boy is fighting for his life after a rare genetic condition was activated – when he caught chicken pox.
Tiago Gouveia was diagnosed with Spinal Cerebellar Ataxia Type Seven (SCA7) after chicken pox triggered the genetic condition, inherited from father Marvino.
The four-year-old can no longer walk unaided, has dropped to just 11kg since May 2015, and has also developed kidney disease as a result of his illness.
Dad Marvino, 40, who lives in Orpington, Kent, is now hoping to raise £30,000 to fund stem cell treatment in Bangkok, Thailand which could cure Tiago.
He said: “He was born well, and he was a normal child growing up until the age of two-and-a-half.
“In May 2015, he was with his cousin who had chickenpox, and it triggered the disease.
“It’s a genetic condition, and I carry the gene – my mum, sister and niece all have it.
“After six to seven months, Tiago stopped walking and got a lot more wobbly before it came to a point where he couldn’t walk anymore.
“He’s lost lots of weight and for now his sight is okay, but it will get worse.
“He was vomiting every day until he got a gastrostomy on April 4, and we’re hoping that will stop it – he had been fed through a tube since November but it was making him sick.
“He developed nephrosis, which affects his kidneys, so now he’s on steroids as well as seven or eight other types of medication.
“It came to point where we said we can’t wait to fix him, so we decided to start the fundraising page for stem cell treatment.”
Tiago has inherited the condition from finance worker Marvino, whose mother, sister and niece also have the genetic disorder.
His Geneva-based sister Canisia Brunier (doub corr), 52, her daughter Melissa, 21, and Marvino’s mother Latifa Goveia (doub corr), 71, who lives in his native Portugal all suffer from SCA7.
The disease can result in loss of eyesight and speech, the ability to swallow and motor skills.
Marvino added: “This is a family crisis – it’s happened to three people in my family – and it’s progressing fast so we need to act now.
“My mum developed it in her 60s, and she’s been losing her eyesight since. She’s now 78 but still manages to walk.
“My sister was fine until she was 40, but it started to affected her balance and vision. She’s 52 now but also manages quite well.
“Then, my sister’s daughter started developing it when she was ten.
“She started to go downhill and lose skills, it really affected her much worse and now she’s 20 and dying – she’s so skinny and she’s in a wheelchair because she can’t walk.
“He’s got a bad gene, and because he’s young and male the disease is developing much more quickly.
“He weighs 11kg and he should be double that, he’s very skinny and you can see all his bones.
“Sometimes he’s in a good mood but the medication gives him really bad moods.
“I don’t have words to describe it, it’s just too much.”
Marvino and full-time carer wife Rosa Gouveia, 38 are also parents to Andre, 11, who does not have SCA7.
The family are now hoping to raise enough money for Tiago to undertake crucial stem cell treatment.
They have already raised £7,200, but are hoping to raise £30,000 for the life-changing treatment.