A group of 25 taking part in this weekend’s gruelling Parish Walk are raising funds for the charity Ataxia UK.
You could be forgiven for not knowing what Ataxia UK is, because the neurological disorder ataxia is so rare, but one of the walkers, Lynne Robinson, is acutely aware of it because her son Macauley (known as ‘Macca’) has it.
The inherited disease – called Friedreich’s ataxia – usually strikes children and involves progressive damage to the nervous system leading to increasing loss of co-ordination, balance and movement. Within 10 to 15 years sufferers are usually wheelchair bound.
Lynne, 41, who lives in Port St Mary with husband Darren, who is also taking part in the parish walk, said Macca first presented with symptoms at the age of 12. ‘His back started hunching when he was 13,’ said Lynne. ‘When he was carrying things he was shaking, he was clumsy.’
So rare is the disease – around 10,000 people in the UK have it – getting a diagnosis took several years and that happened when Macca was 17.
Despite the frustration of knowing for several years something was wrong, but being unable to pinpoint what, Lynne is grateful they did not get an earlier diagnosis, she said: ‘If I would have known when he was 12, well it saved us from what we are going through now – I would have mollycoddled him.’
Now the focus is on making life as normal as possible for Macca, who is now 18. Lynne is keen on finding him a job.
Macca, who’s keen on golf, got a golf buggy for his birthday. He also likes to socialise with his friends, but because the ataxia affects his gait, he has found buying alcohol difficult as shop keepers have mistakenly thought he was already intoxicated.
He carries a card explaining he’s not drunk, but may be clumsy, fall and have slurred speech as he has the medical condition ataxia.
Lynne said: ‘That’s the thing that upsets me the most, people think he is drunk.’
She hopes as the community learns of Macca’s disease this will become less of a problem.
He is stoic in his approach to this devastating disease said Lynne. ‘He is the most laid back person you could meet. He has just got on with it and has been absolutely fantastic.’
She added: ‘First of all he did not want anyone to know about it. Now, a year down the line, everyone does know and because of the incidents [such as difficulties buying drink] the more people that know the better.’
They could raise funds to give them all a holiday, but Lynne said that’s unacceptable. ‘We could not do it, it’s like taking people’s money to go on holiday, my husband Darren said we want a cure.’
All funds raised by doing the Parish Walk, which is sponsored by Manx Telecom, will go towards Ataxia UK’s mission to find a cure by 2020.
‘I thought we’d get as many of us as we could and just do 10 miles, but four or five people said: “Let’s do the parish”. How stupid am I? I have lost 36lb in eight weeks. I have to lose weight to do this flipping walk, I’m the laziest person you can get. Twenty-five will do 1,000 miles between us all in the walk. I cannot wait until it’s all over!’ she said.
Lynne added: ‘We try to treat him as normally as we can. People ask, how are you so bubbly? What do you want me to do? Sit in a dark room and cry? I’m still going out having fun.’
To contact Lynne call 498814 or to donate visit the website justgiving.com/25people1000miles