Ollie’s 200km walk for MDI – interview with MDI member, Paddy Hickey

August 3rd, 2023

MDI member, Paddy Hickey, is planning to walk over 200km from Castlebar to Enfield this August to raise awareness about the neuromuscular condition, Bethlem myopathy, and raise funds for Muscular Dystrophy Ireland. We were delighted to chat with Paddy about it recently…

Paddy, can you give us a little background about why you’ve chosen to do the walk?
My son, Ollie, was three or four when he was given the diagnosis of a muscular dystrophy called Bethlem myopathy. Bethlem myopathy is a rare condition affecting the skeletal muscles and connective tissue. The whole idea for the fundraiser was driven by Ollie – first and foremost to raise awareness about the condition and secondly to raise funds for Muscular Dystrophy Ireland.

Right now, there’s no cure for Bethlem myopathy. And you know you have the moments where you think, ‘What’s life going to be like?’ and stuff like that. I’d like to think that the more awareness that’s raised about every condition the more advances can be made. So, we want to put a big push behind it. And obviously, the selfish thing would be to say it’s because of Ollie. But it isn’t. The funds we raise won’t be for Ollie himself. It will be to raise awareness of the condition as a whole and raise funds to help MDI continue to build on providing much-needed services to those who need it most. And you guys at MDI are doing such great work. I think to raise a profile and shine a light on it is a big thing. I know there’s loads of people in Ireland that have their own reason for supporting it. We’re also delighted that MDI are planning to hold a webinar about Bethlem myopathy and the group of muscular dystrophies that it falls under, called the ‘collagen VI-related myopathies’ in a few months.

Brilliant, Paddy. And how old is Ollie now?
Do you know, he’ll actually be nine during the time I’m doing the walk. I think on that day we’ll be in Roscommon. My wife Claire and our daughter Lily and I will have a little party for him there.

And can you tell us a little about him?
Ollie is great. I know you always think your own kid is the best and all that kind of stuff but like, this kid is killing it. He’s in this music academy and he’s a drummer and he’s actually really fantastic at it. Recently he got up in front of a crowd of 200 people and he knocked it out of the park. And then he won student of the month after that.

He gets obviously a bit frustrated with the fact he can’t play football and stuff like that but then, I don’t know whether you know, the FAI (Football Association of Ireland) have this thing called, ‘Football for all’? He’s starting that in August and I’m going to do the coaching with him as well. But he buzzes for stuff like that like you know. But don’t get me wrong, if I said to him, “You can sit in front of the TV playing your PlayStation all day”, he’d do that too, like any kid and not because he has a condition. That’s because he’s eight and he wants to play PlayStation! And I’m actually talking to someone in the UK at the minute about a suitable bike for him that he can use with his splints as we love cycling. So, long story short he’s doing great. He doesn’t slow down and keeps going and, personality-wise, as everyone says, he’s been here before like. He’s a character!


Can you tell us about the route you plan to walk?
We’ll start from Castlebar on Sunday 13th August and finish in our hometown, Enfield on the 18th. So, the plan is to walk it in six stages:
Sunday 13th – Castlebar train station to Claremorris;
Monday 14th – Claremorris to Castlerea;
Tuesday 15th – Castlerea to Roscommon;
Wednesday 16th – Roscommon to Ballymahon;
Thursday 17th – Ballymahon to Mullingar
and finally, Friday 18th – Mullingar to Enfield.
I’ll be walking along the Royal Canal Greenway as much as possible. It’s a lot easier than walking on the road and much nicer. Claire wants to do some of the walk with me and our family will help out. We hope to stop at a restaurant at the end of the Greenway around Moyvalley and I think everyone in Enfield is hoping to meet up with us there so we will have a group to walk into Enfield together.

Is it going to be a huge challenge for you or how you think you’ll manage?
I’m confident of doing it in stages – around 30km to 40km each day. I’m walking an hour a day to train for it. The plan would be to head off around 10am every morning and finish up around six or sevenish, which in August should be absolutely fine. And the chances are, I’ll meet people along the way and take plenty of little breaks, and without being super technical about it, we’ll walk well. It’s kind of a privilege to be able to do it because you know there’s people that can’t.

I know you’re hoping that your eBay colleagues who live along the route will be able come and cheer you on. How can MDI members and the public show their support?
It would be absolutely brilliant if people could come along and join me for a little bit of the walk or to cheer me on. We’ll keep people up to date on social media about where we are on the route on different days. And really, whatever way anyone can support it, that’s what it’s all about. Although one doesn’t necessarily have to be there in person. Using social media to spread the word would be a great thing. I would be asking people to share and give messages of encouragement and all of that. Here in the actual eBay building in Blanchardstown, we’re going to set up a couple of treadmills in the atrium for colleagues who want to dedicate an hour’s walking. So, for every hour they walk, eBay will match that with a contribution of I think, €19 an hour. Ebay will also match every euro raised by staff up to the equivalent of $10,000 per person.

We wish you every success with your epic walk, Paddy, and we look forward to cheering you on!

About Bethlem myopathy

Ollie has a muscular dystrophy called Bethlem myopathy, which is a rare condition affecting the skeletal muscles and connective tissue. You can read more about Bethlem myopathy here Bethlem myopathy – Overview | Muscular Dystrophy UK. Right now, there is no cure for Bethlem myopathy but there are ways of helping to alleviate the effects of the condition. Research into muscular dystrophies like Bethlem myopathy is nevertheless developing and it is likely that clinical trials will start in the not-too-distant future.

Follow: Ollies Walk for MDI on Instagram

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Categories: Fundraising

1. Muscular Dystrophies

  • Becker muscular dystrophy
  • Duchenne muscular dystrophy
  • Manifesting carrier of Duchenne
  • Congenital muscular dystrophy
  •     •  General
  •     •  MDC1A (merosin-deficient congenital muscular dystrophy)
  •     •  Rigid spine syndrome (RSS)
  •     •  Ullrich congenital muscular dystrophies
  •     •  Bethlem myopathy
  • Emery-Dreifuss muscular dystrophy
  • Facioscapulohumeral muscular dystrophy
  • Limb-girdle types of muscular dystrophy (LGMD)
  •     •  General
  •     •  LGMD 1B (also known as Laminopathy)
  •     •  LGMD 1C (also known as Caveolinopathy)
  •     •  LGMD 2A (also known as Calpainopathy)
  •     •  LGMD 2B (also known as Dysferlinopathy)
  •     •  LGMD 2I
  • Ocular myopathies including ocularopharangeal muscular dystrophy

2. Myotonic Disorders

  • Congenital Myotonic Dystrophy
  • Myotonia
  • Myotonic Dystrophy

3. Congenital Myopathies

  • Central Core Myopathy
  • Congenital Fibre-type Disproportion Myopathy
  • Minicore (Multicore) myopathy
  • Myotubular or Centronuclear myopathy
  • Nemaline myopathy

4. Mitochondrial Myopathies

  • Mitochondrial Myopathies

5. Metabolic Disorders

  • Metabolic disorders (general)
  • McArdle’s Disease
  • Pompe’s Disease

6. Periodic Paralyses

  • Periodic Paralyses

7. Autoimmune Myositis

  • Polymyositis, Dermatomyositis and Sarcoid myopathy
  • Juvenile dermatomyositis
  • Inclusion body myositis

8. Spinal Muscular Atrophies

  • Severe (Type I)
  • Intermediate (Type II)
  • Mild (Type III)
  • Adult spinal muscular atrophy

9. Hereditary Motor and Sensory Neuropathies

  • (Also known as Charcot-Marie-Tooth or Peroneal muscular atrophy)

10. Disorders of the Neuromuscular Junction

  • Congenital myasthenic syndromes
  • Myasthenia Gravis

11. Friedreich’s Ataxia

  • Friedreich’s Ataxia

12. Other (Please Specify)

13. Unspecified