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Gillingham man Chris Fantetti raising money for life changing surgery to treat rare and debilitating condition

A 26-year-old with a rare and debilitating condition is raising money for life-changing spinal surgery in Spain.

Chris Fantetti, 26, lives in constant pain as well as having a number of other symptoms.

Medical professionals were unable to formally diagnose Chris' condition and repeatedly told him he had asthma and anxiety.

Chris lost a lot of weight as a result of his condition and suffers from scoliosis which has caused one of his shoulders to drop (6902891)
Chris lost a lot of weight as a result of his condition and suffers from scoliosis which has caused one of his shoulders to drop (6902891)

The first symptoms he experienced, between eight and 10 months ago, included stomach pains and weight loss.

Overtime, his symptoms worsened to the "horrendous" back pain, shaking, muscle weakness and scoliosis that he suffers with today.

He says that physically, his symptoms are expressed by his shoulder which has dropped by 2 inches, and weight loss.

As a result of his pain, he cannot take part in mixed martial arts training which he used to enjoy. He is also unable to work due to his symptoms.

He said he estimates that has gone to his GP 20 times, accident and emergency 10 times and called an ambulance for himself 5 times.

Chris lost a lot of weight as a result of his condition and suffers from scoliosis which has caused one of his shoulders to drop (6902889)
Chris lost a lot of weight as a result of his condition and suffers from scoliosis which has caused one of his shoulders to drop (6902889)

Every time doctors were at a loss for what was wrong with Mr Fantetti; he was given an asthma pump and told he had anxiety.

"Medical professionals made my own family question my illness.

"The only thing they were offering me in hospital was psychiatric help."

Harvey McEnroe, chief operating officer at Medway NHS Foundation Trust said: "We are sorry to hear about Mr Fantetti’s concerns; we are in contact with him and we are happy to meet with him to discuss these concerns or any other aspects of his care.”

He payed for himself to have a private MRI and to see neurologists and lung specialists, neither of which were able to reach a conclusion as to what his condition was.

Mr Fantetti lives with his girlfriend Heidi, and her parents in Lower Twydall Lane.

At a complete loss, Mr Fantetti turned to pages on Facebook to see if anyone else had reported symptoms the same as his, when he came across a young woman from Northern Ireland who had.

Taylor Boyd-Long from County Down was experiencing excruciating headaches and was eventually diagnosed with a disorder known as Chiari Malformation Type 1.

The condition is not normally diagnosed until adolescence and results in the lower part of the brain pushing down into the spinal canal.

"I spoke to people whose children went through the same thing." He said.

In Ms Boyd-Long's case, her condition was so bad that she contemplated ending her life at Dignatas.

Her mother, Michelle, got in touch with Mr Fantetti and told her about the surgery her daughter underwent at the Chiari Institute in Barcelona, after the family raised the money through a GoFundMe page.

The Chiari Institute is a spine and brain clinic which specialises in a number of diseases associated with these areas of the body.

Mr Fantetti decided to get in contact with the institute, who assessed him at distance and decided to invite him for a consultation.

He travelled to Spain last week, and specialists diagnosed him with Filum Disease and Neuro-Cranio-Vertebral Syndrome.

Both of these conditions are caused by of the traction exerted by a filum terminale that is tenser than normal of the whole nervous system. The filum terminale is a delicate strand of tissue at the lower end of the spinal cord.

The specialists also said that he would be a candidate for spinal surgery.

He has began a GoFundMe page to raise £24,000 towards the cost of his operation, his accommodation and travel, and has already raised over £1,000 after gaining support from members of the public.

If you would like to donate, go to https://www.gofundme.com/6egncc-neuro-cranial-vertebral-syndrome-and-filum-disease

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