Grandad Dave and Motor Neurone Disease

Designer Baby Ltd is proud to support the Motor Neurone Disease Association (MND Association), in memory of ‘Grandad Dave.’

This is a slight change from my usual blogs, but one which is very dear to my heart, and you will see why.

A rare condition, MND is the umbrella term for the group of diseases which affect the nerves in the brain, and the spinal cord. Not everyone shows the same symptoms, or experiences the same changes, and it can take hold at varying speeds too.

But one thing everyone with MND has in common and will have to face, is that it is life-shortening, and there is no cure.

Six people are diagnosed every day, and it continues to affect up to 5,000 adults in the UK at any one time. Sadly, also, six people will die from the disease every day.

The most common symptoms are:

  • muscle weakness with loss of muscle mass (wasting), and movement and mobility problems
  • muscle cramps and spasms including rippling sensations (known as fasciculation)
  • stiff joints which may limit range of movement
  • pain or discomfort because of other symptoms (not usually caused by MND directly)
  • speech and communication problems affecting how you speak, gesture, and show expression
  • swallowing difficulties affecting how you eat and drink
  • saliva problems where thin saliva pools in the mouth or saliva becomes thick and sticky
  • weakened coughing which makes it harder to clear the throat
  • breathing problems which can lead to breathlessness and fatigue
  • emotional lability with inappropriate emotional responses, such as laughing when feeling sad
  • changes to thinking and behaviour for about half of those diagnosed with MND

 (Click here for more information..)

Who Does Motor Neurone Disease Affect?

Although it generally affects adults over 50, there is no proven specific connection to background, lifestyle, or ethnicity. It can be caused by a combination of many factors, but we simply don’t know enough about it yet to define or state facts about the causes.

One of the most famous people to have lived with the disease is Professor Stephen Hawking, who defied the short life expectancy, living with MND for 55 years. He started supporting the Motor Neurone Disease Association when it first set up in the late 70’s and became a patron in 2008. His legacy continues.

And now it seems more sports personalities are bringing the reality of the disease to our attention. Doddie Weir and more recently, Rob Burrow, talk openly about the devastating impact on their families and their lives. It’s truly heart breaking to see such strong and physically fit men change and deteriorate so quickly.   

In Rob’s own words, “First it comes for your voice. Then it takes your legs. It tries to rob you of your breath. But it can’t sap your spirit!”

Motor Neurone Disease - Our Experience

Our family first heard about MND when the Ice Bucket Challenge (also known as the ALS - amyotrophic lateral sclerosis - Ice Bucket Challenge), started back in 2014, and soon went viral through the wonders of social media.

But like many of you no doubt, we simply did our bit with our buckets of ice and our donations. And then promptly forgot about it.

For some, it’s not possible to forget.

And it came back to us in the worst way when Grandad Dave was diagnosed with MND in July 2018.

A year after diagnosis, he lost his driving licence, which also meant he was unable to carry on his job as a taxi driver and wedding chauffeur. Grandad had always been a strong, proud man and held our family together in so many ways. And we were proud of him too.

I had an idea to start JJ’s Baby Boutique (now Designer Baby) when I was on maternity leave, and my Grandad supported me with starting up. He referred to himself as the ‘silent partner’ but I was, and still am, so keen to have his name as the face of the business!

A few years before, we had tried selling Dora the Explorer pyjamas, but that flopped when we didn’t sell any! So, I wasn’t expecting too much from this business.

Maybe we weren’t reaching high enough though.

This time, Grandad needed the focus, and I would message him every time we got a sale. He was so excited when we got our first order, then our first order to France and hit our first 100 orders! It helped to keep his mind occupied, being so involved, and sharing our social media posts. And I loved it.

We then rebranded in March 2020, and saw the business completely take off. He was so happy for us, but still didn’t appreciate the impact he was having on me, just by being here with me.

Sadly, he lost his battle with MND on 8th August 2020 – just 10 days before his second great grandson was born.

Two days before he passed was the last time we saw him. 

I’m so glad he got to see the success which this business is turning into before he passed. And the fact that I can use our business now as a channel to bring this disease to the attention of so many more people is even more beautiful.

Motor Neurone Disease Association

Although as yet there is no cure for Motor Neurone Disease, the MND association focuses on providing access to care facilities, respite and palliative care, shares new information, research and campaigns for those people who are living with or affected by MND in England, Wales and Northern Ireland.

I know you won’t mind me sharing the link to this wonderful organisation https://www.mndassociation.org

When everything settles down across the country, we are going to be running our own fundraising events, and all donations will be going through Grandad Dave’s tribute page - grandaddave.muchloved.com 

Thank you for listening, and remember, you’re never on your own xx