Sarah Ruane: Angel on her Chariot of Hope raising awareness of Congenital Myotonic Dystrophy

by Jill Boulton

Sarah Ruane, a nurse from North Dalton in East Yorkshire, is a woman on a mission – to increase awareness of her son Josh’s condition, Congenital Myotonic Dystrophy. On 7 May she will set out on her Kawasaki ZG 1200 Voyager trike to ride from Land’s End to John O' Groats. This is her story – please support her charity if you can.

Sarah, it was lovely to meet you at East Coast Motorcycle World at the weekend! Please explain what congenital myotonic dystrophy is.

Congenital myotonic muscular dystrophy is a muscle wasting progressive neurodegenerative condition which is genetically inherited from a parent. It is nothing short of a thief which will steal away all of Josh’s skills and then come back for his life. He will lose the ability to walk, swallow and breathe independently. His health is fragile. One month ago his friend Austin died. He started with a simple cold. Ten hours later he was dead. This is a threat we live with every day. To most people a common cold is an irritating inconvenience – we have come to fear it as much as most people fear meningitis.

Tell me about the charity you set up.

Three years ago we started a charity called the Congenital Myotonic Muscular Dystrophy Fight Fund. To date the four parents who launched this have raised £90,000. It has just paid for a piece of research into this condition. The charity we set up also has a website – http://www.congenitalmyotonicdystrophy.org/

Can you tell me what led to you adopting your son, Josh, (pictured below) and literally taking him home from work one day seven years ago?

When I met Josh he was a helpless newborn – he was very ill and totally dependent. His prognosis was very grim and he was not expected to see his first birthday. He is now 7.  Repeated attempts to find foster carers failed. His address was c/o Hull Royal Infirmary. I remember so well going into his barren room as the nurse in charge that day.  A foster carer came to look at him. She did not touch him. I clearly remember that. “He’s not for us," she said. I was utterly shocked at that. Someone in the room said: “I’ll take him”. I remember hearing those words and realising they had come out of my own mouth.

That was as much thought that went into it. After that, things literally raced ahead. Two weeks later at age 47 I had a 5 month old baby in my car and we were headed home, along with various bits of equipment and information.

In 27 years’ paediatric nursing I had never come across the condition. I have come to learn that very few people have. I was told there was no one else out there. That was, frankly, a lie. We have since found 200 plus families.

What’s your major reason for doing this trip?

I am hoping to get some awareness out there.  It’s a vicious and cruel condition. It will steal all Josh’s skills over time and then his life. Every day I pray for a miracle. I have taken him to the USA trying to find doctors who will help us.

My dearest wish is for a cure. There are other kids out there with this condition. It’s little known and often misdiagnosed. All I can do is try and raise awareness.

Like anything in life I now realise that to effect change we have to get this known about. We need help to get this condition heard of so that people will demand a cure. Demand research to find a cure and know that they are not alone.

I absolutely refuse to go quietly. I will be kicking and screaming till the end. Everyone will know about Josh and the condition he must fight every day. It’s the least I can do. I am determined. I am scared. I am his mother.

What route are you taking and what preparation have you done?

Our route has been planned by Relayriders UK. They have really helped. My friend is riding pillion with me (poor woman … I’m sure she doesn’t know what she’s letting herself in for and frankly neither do I!) .

We are hoping to stop at as many biker cafes/pubs as possible. No motorways involved, so 125s can join in, too.

In terms of preparation we have not done much. My partner is taking a van as back-up, mechanic wise.

Basically, I am winging it.  Fortune favours the brave and all that!

Josh cannot smile as his facial muscles are affected and his cognitive ability is declining as the disease marches slowly on. But he is a happy and utterly beloved child. And I will never give up.

I expect to suffer somewhat on the ride.  In fact I will be glad to. It will be nothing compared to what Josh endures without complaint. I just need to get home to him safely and in one piece.

Is anyone joining you along the way? How do people contact you if they want to join in?

It’s an all-female ride but we have no real objection to the boys if they really want to join in!  Hoping people will do the odd leg or two but not worried if not. I am going to publish the route on the Facebook page and also the Motorbike Women group. They can text me on 07477573321 or just turn up for relevant legs. I'm hoping that once the  route is published it will inspire people.

Tell me about your choice of vehicle …

As Josh got older I tried to let him have as many experiences as possible. I discovered that he really enjoyed being around noisy bikes and sitting on them. Unfortunately he is too weak to pilly on a bike so I came up with the idea of a trike. I had been out of bikes for 32 years. I started looking and we found a ZG1200 voyager which has been custom painted with Joshua’s face on the tank. The trike is called Chariot of Hope.

And what does Josh think of it?

Josh absolutely loves it. The week I am spending doing this ride is the first time I have ever been away from him. It will be very hard but I hope it will ultimately help him. The paint job on the trike features Josh so I will at least be able to look at him!! Unfortunately his muscle weakness has robbed him of his ability to smile but inside it’s a mile wide.

How did you come up with the idea of the ride?

On a complete whim,  I decided to use the bike to raise awareness.

Then, I decided on a long ride right up the length of the country. Ten minutes later I cobbled together a Facebook page (Cure myotonic dystrophy chariot of hope ride) and much to my partner’s horror it was set!

It’s the 7th May, 1300 miles, one week to do it in. I posted on the Motorcycle Women Facebook page and got some ladies to join us (hopefully).

I wangled the time off work somehow, bought a Goldwing trailer, tent, table and chair, small stove etc.

I’ve never done anything like this before but God I would love to stop traffic with it!

I want people to know Josh was here in this life. He matters. His condition needs curing because it’s terrible to watch and I can’t bear the thought of life without him.

How can people reading this support you and Josh?

They could donate direct to the Facebook charity page Congenital Myotonic Dystrophy Fight Fund  or via http://www.congenitalmyotonicdystrophy.org/ website.

Thank you Sarah, it was delightful to meet you and learn about Josh and your trip. We wish you a safe and successful journey. Please keep in touch and we hope to meet you again one day!