Parkinson’s disease is a condition normally associated with people aged over 60. But what happens when your child is diagnosed with this debilitating illness at just 11 years old? Sarah Hill from Folkestone told her story to the BBC.
Dismissal
Sarah was worried about her son, Alex, when he began complaining of sore legs and being tired all the time. After taking him to their GP, she was told not to worry and her concerns were brushed off. She returned a while later after Alex developed odd behaviours – asking their GP if a psychiatrist was maybe the solution – but again, she was dismissed.
“We know that people under 40 can often struggle to get a diagnosis because juvenile Parkinson’s is so rare. However, Parkinson’s can affect people of all ages. It is vital that professionals look at the symptoms a person has, rather than making assumptions based on their age, so people get the right diagnosis, first time.”
Months passed and Alex’s condition deteriorated. He started falling over and his handwriting became difficult to read. He’d also developed a slight tremor. Sarah’s father wondered if Alex may be suffering from Parkinson’s, but the GP laughed at the mere suggestion.
A diagnosis of epilepsy was made and Alex was put on medication to treat his symptoms. The medication made no difference and Alex got worse, falling over 20 times a day.
Diagnosis
Eventually, Alex was referred to Evelina Children’s Hospital in London. Within a day, he’d been diagnosed with juvenile-onset Parkinson’s disease. There’s around 145,000 people in the UK living with Parkinson’s, but only 5% of people experience symptoms before 40 years old. Being diagnosed under 20 years old is extremely rare.
Professor David Dexter, Deputy Director of Research at Parkinson’s UK said:
“We know that people under 40 can often struggle to get a diagnosis because juvenile Parkinson’s is so rare. However, Parkinson’s can affect people of all ages. It is vital that professionals look at the symptoms a person has, rather than making assumptions based on their age, so people get the right diagnosis, first time.”
Treatment
Alex stopped responding to treatment after a few years and the decision was made to have deep brain stimulation treatment. In this procedure, electrodes are implanted in the brain, which deliver high-frequency stimulation to targeted areas. This treatment reduced the tremors Alex was suffering with and allowed him to smile again and do things like play his Xbox.
As Alex’s condition deteriorated, his symptoms got worse and his mother struggled to cope – feeling like just a carer and no longer having fun as a mother. The decision was made for Alex to move into a nearby care home, allowing Sarah to focus on her relationship with Alex.
Future
Alex has adapted to life in his new home, forming close bonds with the staff there. He’s still fully involved in family life and his mother visits him every other day – video calling in-between. Although struggling with some changes the condition has forced on him, such as losing the ability to walk, Alex remains positive. He likes to focus on the fun times he’s having now and describes his mother as “the best mum in the whole wide world”.
