Parents spend £35,000 in bid to diagnose their son's mystery illness

Devoted parents spend £35,000 in

Parents spend £35,000 in bid to diagnose their son's mystery illness

Devoted parents spend £35,000 in a desperate bid to diagnose the mystery illness that has paralysed their once fit and healthy 16-year-old son

  • Valentino Erodotou developed a burning sensation in his chest in January 2018
  • And just two weeks later the 16-year-old was robbed of his ability to use his legs
  • The 16-year-old has been unable to walk ever since, his parents have revealed
  • His parents Thalia and Nick, of London, have forked out £30,000 of their savings
  • The couple, both 41, also spent a further £5,000 raised through crowd-funding
  • However, the couple are refusing to give up and are hoping to raise more money 

The parents of a boy struck down by a mystery illness that left him paralysed have spent more than £35,000 in hope of getting him diagnosed. 

Valentino Erodotou developed a burning sensation in his chest in January 2018, and just two weeks later he was robbed of his ability to use his legs.

The 16-year-old has been unable to walk ever since, despite his parents' desperate efforts to find out what caused his condition.

Terrified their son may never lead a normal life again, his mother Thalia and father Nick have forked out the entirety of their £30,000 savings.

The couple, who live in Oakwood in north London, have also spent a further £5,000 of £29,000 raised through crowd-funding. 

However, the couple are refusing to give up. Mrs Erodotou said: 'Every penny we can raise now is greatly appreciated.'

Valentino Erodotou developed a burning sensation in his chest in January 2018, and just two weeks later he was robbed of his ability to use his legs (pictured at his prom)

Valentino Erodotou developed a burning sensation in his chest in January 2018, and just two weeks later he was robbed of his ability to use his legs (pictured at his prom)

Terrified their son may never lead a normal life again, his mother Thalia and father Nick have forked out the entirety of their £30,000 savings (pictured with his parents and two sisters Aaliyah and Romea)

Terrified their son may never lead a normal life again, his mother Thalia and father Nick have forked out the entirety of their £30,000 savings (pictured with his parents and two sisters Aaliyah and Romea)

The 41-year-old, who runs a nail and make-up studio, added: 'He’s not had a DNA test, genetic tests, or seen a rheumatologist or an immunologist yet.

'We are trying to tick off all the specialists that can potentially find anything. We’re not ready to say, "We’ve done enough".

'He’s got the rest of his life ahead of him so, God willing, we will find an answer. We want to give him a fighting chance.'

Mrs Erodotou said Valentino still has all the same crippling symptoms he started with - and that 'nothing has changed'.

Mr Erodotou, 41, who ran a sales team at a software company claims he has since taken a junior role so he does not have to travel as much.

Valentino, who went to his prom in a wheelchair, hasn't been to school for an entire year, and didn't sit his GCSEs.

Mrs Erodotou said: 'His life is spent sitting in his room, doing a bit of work if he can and playing computer games. 

'He’s made friends online which keeps him going, playing with kids who do not know he is ill.

The 16-year-old has been unable to walk since January 2018, despite his parents' desperate efforts to find out what caused his condition (pictured before he got ill)

The 16-year-old has been unable to walk since January 2018, despite his parents' desperate efforts to find out what caused his condition (pictured before he got ill)

Valentino (pictured before he became ill) hasn't been to school for an entire year, and didn't sit his GCSEs

Valentino (pictured before he became ill) hasn't been to school for an entire year, and didn't sit his GCSEs

Valentino complained of an unusual sensation in his chest and a sharp pain when he breathed in after returning home from school in January 2018 (pictured before he got ill)

Valentino complained of an unusual sensation in his chest and a sharp pain when he breathed in after returning home from school in January 2018 (pictured before he got ill)

'But that is not the life you want for your son and he would much rather be out in the park with his friends.'

Mr Erodotou added: 'Valentino played all kinds of sports like football, rugby, tennis and free running and competed in gymnastics when he was younger.

'He was pretty good at most things he turned his hand to and was progressing well at school. He had a great bunch of friends, too.' 

Valentino complained of an unusual sensation in his chest and a sharp pain when he breathed in after returning home from school in January 2018. 

He stopped going to school in February 2018 because he couldn't manage it. He had some home tuition.

Four days later, when he was unable to move his body properly, his parents took him to a nearby A&E.

Mr Erodotou, 41, who ran a sales team at a software company claims he has since taken a junior role so he does not have to travel as much (pictured with Valentino)

Mr Erodotou, 41, who ran a sales team at a software company claims he has since taken a junior role so he does not have to travel as much (pictured with Valentino)

Mrs Erodotou said: 'His life is spent sitting in his room, doing a bit of work if he can and playing computer games' (pictured together)

Mrs Erodotou said: 'His life is spent sitting in his room, doing a bit of work if he can and playing computer games' (pictured together)

The 41-year-old, who runs a nail and make-up studio, added: 'He’s not had a DNA test, genetic tests, or seen a rheumatologist or an immunologist yet' (pictured before he got ill)

The 41-year-old, who runs a nail and make-up studio, added: 'He’s not had a DNA test, genetic tests, or seen a rheumatologist or an immunologist yet' (pictured before he got ill)

Even Valentino's sisters - Aaliyah, 14, and Romea, 10 (pictured) - were being affected 'badly' by their big brother's illness

Even Valentino's sisters - Aaliyah, 14, and Romea, 10 (pictured) - were being affected 'badly' by their big brother's illness

WHAT HAVE DOCTORS TESTED VALENTINO FOR? 

GASTRITIS

Doctors initially suspected he had gastritis, an inflammation of the stomach lining, because of the burning he described in January 2018.

He was prescribed omeprazole, which is used to treat oesophageal problems such as acid reflux. But it didn't help.

LYME DISEASE  

A homeopathy in Cyprus in June 2018 suggested he could have Lyme disease - a bacterial infection spread to humans by infected ticks.

They recommended a course of supplements costing £1,200 a month, which his parents stopped when there was no improvement after four months.

CHRONIC FATIGUE SYNDROME 

After more blood tests came black normal, it was suggested Valentino could have chronic fatigue syndrome. He was referred to a specialist clinic, which had a waiting list of several months.

But Mrs Erodotou said they knew he didn't have CFS because 'he has never had a constant urge to sleep, it's his body that's weak and tired'.

GLUTEN ATAXIA

Desperate for a diagnosis, his parents dug further into their savings, spending £8,000 on seeing another private doctor.

They said he had gluten ataxia – a rare autoimmune condition where the body’s reaction to gluten can cause damage to the cerebellum in the brain, which can result in problems with co-ordination, balance and speech.

When he again showed no sign of improving after four months, it became clear the diagnosis was not correct.

What are doctors still testing for? 

MITOCHONDRIAL DISEASE 

Now they are waiting for more blood test results to rule out mitochondrial disease, an inherited illness that can cause a loss of muscle coordination.

NEUROLOGICAL DISORDER

The same results will also check if he has functional neurological disorder - neurological symptoms that affect the functioning of the body.

Recalling her son's symptoms, Mrs Erodotou said: 'He was moving very slowly and the muscles in his eyelids had dropped.

'It was out of character to see a big, strong 15-year-old not able to move his body properly.'

Doctors suspected he had gastritis, an inflammation of the stomach lining, because of the burning he described.

He was prescribed omeprazole, which is used to treat oesophageal problems such as acid reflux.

Mrs Erodotou said: 'I knew this diagnosis was rubbish because of the fatigue he was also experiencing. 

'His legs completely slowed down and eight weeks after the initial chest pains, he couldn’t walk at all.

'We were in an absolute state trying to find out what was wrong with him. We went to see a private paediatrician who also said it was gastritis.'

She added: 'Valentino is quite laid back and won’t show you he’s panicking or worried, but I knew he was frightened. 

'I would see him at night punching the pillow, but he didn’t know I could see that. He didn’t want to stress out his family. 

'Nick was travelling a lot so Valentino felt he had to be the man of the house and put a brave face on. We were so worried. 

'We were going completely out of our minds. Out of desperation, we would seek any help we could get.' 

After further blood and muscle tests with a neurologist came back normal, the family travelled to Cyprus in June, to see a homeopath.

While they were there, Valentino also had an electrocardiogram - a test to check the heart's rhythm and activity.

The doctor suggested he could have Lyme disease - a bacterial infection spread to humans by infected ticks.

They recommended a course of supplements costing £1,200 a month, which they stopped when there was no improvement after four months.

When they came home from Cyprus after three weeks, the family also attended another appointment with a paediatrician.

Valentino had more blood tests and underwent a brain and spine MRI, however the results again came back normal.

It was then suggested he could have chronic fatigue syndrome (CFS) and he was referred to a specialist clinic, which had a waiting list of several months.

But Mrs Erodotou said they knew he didn't have CFS because 'he has never had a constant urge to sleep, it's his body that's weak and tired'.

Doctors suspected he had gastritis, an inflammation of the stomach lining, because of the burning he described. He was prescribed omeprazole, which is used to treat oesophageal problems such as acid reflux (pictured after he became ill)

Doctors suspected he had gastritis, an inflammation of the stomach lining, because of the burning he described. He was prescribed omeprazole, which is used to treat oesophageal problems such as acid reflux (pictured after he became ill)

After further blood and muscle tests with a neurologist came back normal, the family travelled to Cyprus in June, to see a homeopath. While they were there, Valentino also had an electrocardiogram - a test to check the heart's rhythm and activity (pictured after he got ill)

After further blood and muscle tests with a neurologist came back normal, the family travelled to Cyprus in June, to see a homeopath. While they were there, Valentino also had an electrocardiogram - a test to check the heart's rhythm and activity (pictured after he got ill)

She added: 'We were always hopeful the next appointment would be the one that would provide answers. But it would come and go and we would be in the same situation.

'When out and about, our son would be in a wheelchair. He couldn't walk at all without someone holding him up.

'He still has all the same symptoms he started with - the drooping eyelids, no strength in his legs, the burning in his chest and the fatigue. Nothing has changed.'  

Taking to social media in June 2018, the family shared videos of Valentino in the hope that someone would get in touch offering answers. 

They were inundated with messages of support although, sadly, no one offered a solution.

Desperate for a diagnosis, they dug further into their savings, spending £8,000 on seeing another private doctor.

Taking to social media in June 2018, the family shared videos of Valentino in the hope that someone would get in touch offering answers (pictured after he got ill)

Taking to social media in June 2018, the family shared videos of Valentino in the hope that someone would get in touch offering answers (pictured after he got ill)

Desperate for a diagnosis, they dug further into their savings, spending £8,000 on seeing another private doctor (pictured with his sisters)

Desperate for a diagnosis, they dug further into their savings, spending £8,000 on seeing another private doctor (pictured with his sisters)

They said he had gluten ataxia – a rare autoimmune condition where the body’s reaction to gluten can cause damage to the cerebellum in the brain, which can result in problems with co-ordination, balance and speech.

Mrs Erodotou said: 'We put him on a really strict gluten free diet. We were told if even a grain of gluten passed his lips, it would set him back three months.

'So we only gave him meat from a special farm that didn’t feed the animals grain. We became obsessive. Valentino didn’t leave the house. 

'Nobody could even bring a biscuit in, because it was so risky. We had to watch everything we did and touched. That went on for three or four months.'

When he again showed no sign of improving after four months, it became clear the diagnosis was not correct.

The couple then took him to another homeopathic doctor, who suggested a rare disease specialist may be able to provide answers.

Mr Erodotou said: 'At this point it was really affecting Valentino psychologically. He would get his hopes up and think we were finally going to find the answer.

'The illness was really restricting him and he didn’t want to interact with people or see his friends, because he couldn’t do things he wanted to do.

'When he went on holiday he remembered what he used to be able to do like swimming, snorkelling, jet skiing. 

'It was just a reminder of the things he now couldn’t do. It was a battle to keep him upbeat as we didn’t have any answers.'

Valentino's parents said they will do whatever it takes to get the best help available for their boy. Mr Erodotou said: 'We try and show an example to Valentino that sometimes in life you get dealt a bad card and you have to battle through' (pictured with his sisters)

Valentino's parents said they will do whatever it takes to get the best help available for their boy. Mr Erodotou said: 'We try and show an example to Valentino that sometimes in life you get dealt a bad card and you have to battle through' (pictured with his sisters)

Valentino is pictured with Aaliyah and Romea before he became ill

Valentino is pictured with Aaliyah and Romea before he became ill

Even Valentino's sisters - Aaliyah, 14, and Romea, 10 - were being affected 'badly' by their big brother's illness.

Mrs Erodotou said Romea had to take time off school for anxiety, adding: 'They are younger than him and look up to him, so they were really scared.

Meanwhile, the CFS clinic had confirmed that he did not have the condition and in May this year, the family saw a rare disease specialist.

They performed a lumber puncture – taking fluid from Valentino's spine - to test for conditions affecting the brain. Again, it failed to provide any answers.

Now they are waiting for more blood test results to rule out mitochondrial disease, an inherited illness that can cause a loss of muscle coordination.

The results will also check if he has functional neurological disorder - neurological symptoms that affect the functioning of the body.

They also plan to visit Cyprus - where they have relatives - again, this time to see a geneticist.

And they are considering trying to get him an appointment at the Mayo Clinic in Minnesota - a world renowned clinic specialising in treating difficult cases.

And Valentino's parents said they will do whatever it takes to get the best help available for their boy. 

Mr Erodotou said: 'We try and show an example to Valentino that sometimes in life you get dealt a bad card and you have to battle through.

'He has to push through it and push against it. It’s our duty as parents to try and instil that fight in him, rather than letting it get to him. 

'It’s not easy, but we need to make sure he does not give up.

'These days with new technology and medical advancement, at some stage we will find what the issue is. 

'But you can’t do that if you have not got the right mindset. We need to stay positive.'

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