Boy who got Parkinson's disease aged seven: Nearly 20 years on, his extraordinarily moving story is a triumph of love, hope and courage

By CAROLINE SCOTT FOR THE DAILY MAIL   September 2, 2019

• The average age for onset of Parkinson's disease is 60, but Alex was just seven
• Nearly two decades later, the young man's condition has gradually deteriorated
• While he can move his head and raise his arms, he can no longer use his hands 

Alex Hill is a handsome young man with a smile that lights up the room. But at 25 he is burdened with a cruel condition usually associated with older age: Parkinson’s disease.

The average age of onset is 60 — Alex was just seven when his first symptoms emerged.

Nearly two decades later, his condition has gradually deteriorated, so while he can move his head and raise his arms, tightness in his muscles means he can no longer use his hands, stand, or speak.

As his mother, Sarah, talks about his loss of physicality, Alex types the word ‘sad’ on his electronic communication board.

At 25 Alex Hill is burdened with a cruel condition usually associated with older age: Parkinson’s disease. Pictured with his mother Sarah (left) and sister Becky

‘Does it make you feel sad listening to us talk about it, Alex?’ she asks him.

‘Yes.’

‘Do you want to stop?’

‘No,’ he types after a pause.

Alex, from Folkestone, Kent, is thought to be the youngest patient in the UK to be diagnosed with Parkinson’s. His family are telling their story to show the real impact of a disease that affects a million Britons — patients, their partners, family and friends — but one which too often people don’t think is serious.

The first inkling of any problem for Alex came after a school sports day when he was seven.

‘He kept saying: “My muscles hurt,” ’ says Sarah, 51. ‘I thought he’d feel better after a hot bath, but nothing seemed to help.’

A few weeks later, Alex’s mood changed abruptly: instead of racing happily into school, he became anxious and clingy. He also developed obsessive behaviours.

‘He wouldn’t leave the house without ten pairs of underpants,’ says Sarah. ‘He couldn’t explain why, but I had to count them until he was happy I’d got the right number.’

They both recall the day when he was eight and Alex fell in the living room for no apparent reason. ‘He said he’d tripped over his school bag, but when it happened again, it really scared me because he was standing still and there was absolutely nothing he could have fallen over,’ says Sarah.

Alex’s GP referred him to a paediatrician, who ordered a brain scan — which came back clear.

Suspecting epilepsy, which Alex’s dad (who had left when he was four) had suffered from, the paediatrician prescribed anticonvulsant drugs.

The first inkling of any problem for Alex came after a school sports day when he was seven

But instead of getting better, Alex continued to fall. ‘On one day, he fell 28 times,’ says Sarah. ‘And he began to projectile vomit without warning. I knew it couldn’t be epilepsy. I was desperate for answers.’

Alex continued to go to school, but in a wheelchair. Over the course of the next year, his hand control deteriorated to the point where he could barely hold a pencil.

Just before his tenth birthday, Sarah’s father, who’d been an Army medic, noticed Alex had a slight tremor in his little finger. ‘He came to the next appointment at the Royal Victoria Hospital in Folkestone, and asked if it could be Parkinson’s,’ recalls Sarah. ‘But the paediatrician dismissed this, saying Alex was far too young.’

Since the epilepsy medication was having no effect, it was decided to refer Alex to a top neurologist at Evelina Children’s Hospital in London.

There, against all the odds, it turned out that Alex did have Parkinson’s disease, a progressive disorder of the nervous system, characterised by low levels of dopamine — a brain chemical that sends signals between nerve cells. The condition presents with symptoms including tremors, instability, tense muscles and changes in speech, as well as anxiety, digestive problems, insomnia and memory loss.

Around 145,000 people have Parkinson’s in the UK and, as people live longer, that is set to increase by a fifth by 2025

‘What makes Parkinson’s particularly difficult to diagnose is that patients don’t all experience the same set of symptoms,’ explains Dr Donald Grosset, a consultant neurologist at Queen Elizabeth University Hospital in Glasgow.

‘People associate Parkinson’s with shaking, but more than a quarter of patients don’t experience tremor,’ he says. ‘Or they get a tremor which goes away.

‘But the other features — stiffness and slowness — affect everyone with Parkinson’s.

‘Dopamine is a key part of the pathway between thinking about a movement and making it, so when it’s running low, movements are much slower or shaky,’ explains Dr Grosset.

The symptoms usually start on one side of the body, and after about a year the other side is affected, he adds.

Recent research from Oxford Parkinson’s Disease Centre suggests that there may be a number of types of Parkinson’s, with different symptoms — and some types progress faster than others.

‘While the average age of diagnosis is around 60, people can get Parkinson’s earlier or later in life,’ says Dr Beckie Port, research manager at the Parkinson’s UK charity.

‘Some people may have a genetic change which significantly increases the risk of developing it early.’

Around 145,000 people have Parkinson’s in the UK and, as people live longer, that is set to increase by a fifth by 2025.

When Alex was seen at the Evelina Children’s Hospital, he underwent a battery of neurological tests.

One of those was a DaT-scan, where an injection of a radioactive chemical that attaches to the brain structures which transmit dopamine is given. This showed he had next to no dopamine in his brain.

‘To say the doctors were excited would be the wrong word,’ says Sarah. ‘But they were hugely interested in such a young Parkinson’s patient — they believed he was the youngest ever diagnosed in the UK.’

‘I told Alex it was nothing we couldn’t cope with,’ says Sarah. ‘The last thing I wanted was for him to think I was afraid.’ But deep down, Sarah knew that the diagnosis had devastating implications.

At 12, Alex (left) lost power in the muscles in his jaw, and he was given a feeding tube. By 14, his speech had disappeared

‘I was a single mum. I hadn’t been with my partner, Colin, for long at the time and I remember saying to him: “If you can’t handle this, now is the time to opt out.”

‘I knew by the speed that Alex was declining that this was going to be extremely hard.’

Alex was prescribed levodopa, a drug that the brain converts into dopamine. It is effective for some patients but only temporarily halted the symptoms for Alex, and, Sarah says it initially acted like ‘rocket fuel’.

‘It made him so hyperactive, he’d run up and down the stairs, and constantly call the police,’ she says. ‘We laugh about it now, but we were exhausted.’

But after a year the drug stopped working — as it typically does — and Alex ground to a halt, again unable to move. Although he was given rotigotine patches, which also stimulate dopamine receptors, between the ages of 12 and 13, he declined rapidly.

At 12, he lost power in the muscles in his jaw, and he was given a feeding tube. By 14, his speech had disappeared.

‘I could also see him losing function in his hands from one day to the next,’ says Sarah. ‘He gradually stopped being able to move the controller on his Xbox. It was heartbreaking.’ What made everything harder is that since Alex is the youngest patient British doctors have ever seen, there was no way of knowing what the future held.

‘What makes Parkinson’s particularly difficult to diagnose is that patients don’t all experience the same set of symptoms,’ explains Dr Donald Grosset, a consultant neurologist at Queen Elizabeth University Hospital in Glasgow

When he was 14, Alex underwent deep brain stimulation (DBS) — where electrodes are implanted into the basal ganglia, the area of the brain that controls voluntary motor movements, cognition and emotion. This reduced his tremors and gave him back his smile — many people with Parkinson’s have a mask-like expression due to paralysis of the facial muscles — but Alex’s speech and movement have not improved.

‘All the drugs we have are aimed at topping up missing dopamine, which helps the symptoms,’ says Dr Grosset.

‘Research is now turning to a new approach — looking at a protein, alpha-synuclein, which clumps together and damages the brain cells of people with Parkinson’s.

‘The idea is that one day we might be able to immunise against the abnormal protein in the same way we immunise against infection. If I could just slow down the progression of this disease in my patients, that would be marvellous.’

While her 28-year-old daughter Becky says her mother never showed the strain, when Sarah lay down at night, her mind would race.

‘There was one evening when Alex was about 15, I had the most tremendous breakdown and I couldn’t stop crying,’ says Sarah. ‘It was exhaustion and fear . . . The thought I wouldn’t be able to go on coping.’

The fear of suddenly losing Alex was so great that for a long time, Sarah lived every day as if it might be his last. He continues slowly to decline. Three years ago he could stand with support; now he can no longer bear weight on his legs.

But he hasn’t had a chest infection — which could be very dangerous — for several years; his condition is otherwise stable.

Three years ago, Alex went to live in a residential home with 24-hour nursing care. Although it was difficult at the time, Sarah knows it was the best decision.

‘I needed to be his mum again, not his carer,’ she says. But she still feels she’s letting him down. ‘I’m his safe place; as long as he’s with me, he feels he can do anything,’ she says sadly.

Alex would love to have been a doctor. ‘It breaks my heart when he tells me he wants to help other people,’ she says. ‘I say: “Maybe one day . . .” Everyone needs to have hope.’

I ask Alex whether it’s harder to accept what’s happening now he’s older: ‘Yes,’ he responds, because when he was little his mum protected him from everything.

‘We always said we’d fight this and we’re still fighting. What do we say to Parkinson’s?’ she asks Alex. He grins from ear to ear. ‘You can’t have me, so get stuffed,’ he types.

‘Yes, Parkinson’s is rubbish, but we make fun out of anything and everything,’ adds Becky, putting a protective arm around her brother.

Sarah insists their situation will never be tragic. ‘I feel Alex has had everything thrown at him. But I never let sadness get me down for more than a few moments,’ she says. ‘It’s my job to be on top of everything for Becky and Alex.’  

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