Alex’s Wish

Emma’s Story

It was Wednesday, 22nd April 2010, a day I’ll always remember. I was picking up Alex after work.

‘There’s something you need to check with Alex,’ one of the nursery staff said. One of the games that afternoon involved getting the children to run to the rear wall and back. When all the children had returned, Alex was only just getting up from the floor.

‘We’re sure it’s nothing to worry about,’ the staff member continued. ‘We just think it’s something you should get checked out.’

At the time, I wasn’t too alarmed. But when I called my Mum the following morning, alarm bells started ringing.

‘Do you remember your Uncle,’ Mum asked. ‘The one who was in a wheelchair? The one who died when you were just 3 years old?

Of course, I remembered his name. Why was this relevant?

My Mum thought Alex might have the same condition he did.

Back in the 1970s, little was known about my uncle’s condition. It was only later in the 1980s that the gene was found, and my family learned more about it. My Mum told me the name. Duchenne Muscular Dystrophy.

After the call, I rang Andy, who is Alex’s dad. I explained what I had just heard, and he typed the words into Google.

‘Oh my God,’ Andy cried. ‘He’s got it!’ He’s got it!’

‘What? No don’t be silly,’ I said.

But all the symptoms were there. Falling over lots. Struggling to get from a sitting to standing position. Difficulty climbing the stairs. Enlarged calf muscles.

I felt sick to my stomach. I carried on driving to work, aiming to check the internet when I got there. I need to see it for myself, I thought. When I did, I burst into tears.

This is what it said:
‘Boys with Duchenne will be in a wheelchair by the time they’re 10 years old.
Life will be drastically shortened. Boys typically only live into their mid-twenties.
There are no treatments other than steroids, which have serious side effects.
THERE IS NO CURE.‘

 

A life-changing diagnosis

I told my boss something urgent has come up and drove straight home. When we saw Alex’s GP for an emergency appointment, the doctor arranged for a blood test. He also tried to allay our fears. But we knew…

It was an agonizing wait for the results. The next day was a complete blur. We couldn’t eat. We couldn’t sleep. We felt useless. We had 7 days to wait, and we felt like we were going out of our minds.

Late Saturday morning, just 24 hours on, we got the call that would change our lives forever.

‘You were right,’ the hospital doctor said, ‘your son has Duchenne Muscular Dystrophy.’ The doctor then explained how Alex’s CT count was 27,000.

There are only a few hundred found in healthy children.

The doctor told us that we would receive a letter over the next week for an appointment with a consultant. ‘Everything will be explained then.’ And that was it. We were left to pick up the pieces.

The following few days and weeks were horrific. We couldn’t stop crying. We had no idea where to go from here. I remember looking at Alex. All I could think about was Duchenne and how this devastating disease was going to affect him. Stop his life before it had even started.

Alex was the most sweet, beautiful little boy. This wasn’t fair. Why him? We wanted to shout and scream. Receiving such a diagnosis brings out the worst in you. You feel so angry and bitter. With a sadness that sits in the pit of your stomach.

It was the same feeling I had when I lost my father at just 16 years old. That feeling of loss. I was mourning the loss of life that I thought my son had in front of him.

As a family, we couldn’t sit back and do nothing. So, we spoke to as many people as we could. Scientists, professors, and other charities for Duchenne around the world.

The good news was that work was being done to help bring about new treatments. More funding was required, however, to continue the research and trial new drugs.

I raised over £40,000 for two Duchenne charities in the UK. But if substantial amounts were going to be raised, I realised I needed to set up a charity of my own.

So, that was when Alex’s Wish was born!

Our mission to find a cure

The mission is simple. We aim to raise vital funds to help bring new treatments to our boys as quickly as possible.
If we can help boys do the following, we will have done a good job:

• stay mobile for longer
• keep them as healthy as possible
• help build their muscles

Until then, we have much work to do. Every day will be spent raising funds so that new treatments can help everyone affected.

Since our launch, we’ve become proud Charity Partners to Duchenne UK. They are a lean, focused, and ambitious charity based in the south of England. By working in partnership with them, we have more chances of reaching our goal: Conquering Duchenne for everyone.

We’re also a lean charity. All the trustees and I are voluntary. We take nothing out for ourselves. It’s our promise that all the money raised will go towards funding new projects. These will be centred around new treatments. Or simply help fund vital work to ensure as many boys as possible can take part in these trials.

We keep costs to a minimum and spend very wisely. So, we give only to projects that have been through a stringent scientific advisory board. This ensures they’re fit for purpose, and work within a timeline we’re happy with.

After all, we want to conquer Duchenne for this generation.

We want to inspire you to do something amazing for our charity. Like the guys here at The Inspired Rider. Please help us in our mission.

Much love Emma (Alex’s Mum) X