Help Rob live his best life with MND

A new father on 31st May to his son, Jenson and husband to childhood sweetheart, Louise. And suddenly, the diagnosis of a devastating terminal disease at the age of 33. 

In the most heartbreaking of circumstances, my best friend and cousin, Rob, has been diagnosed with ALS a form of motor neurone disease (MND), a progressive neurodegenerative disease that affects the function of nerves and muscles, which kills ⅓ of sufferers within just 1 year.  

It started with a loss of strength and grip in his left hand towards the end of last year, originally thought to be a simple case of carpel tunnel syndrome. Then, Rob started to experience occasional slow speech. 

Desperate to find answers and get Rob better before the baby arrives, private investigations were paid for to see a neurologist then get the required tests due to long wait times of over 20 weeks on the NHS. 

Fast forward to April 2022 and a 15 minute results appointment turned their world upside down.

Nobody was expecting such a devastating diagnosis, and Rob is still digesting the reality of living with a terminal disease, especially with a baby due at the beginning of June.

Rob’s condition is progressing rapidly, and medication will only be able to extend his life expectancy by 2-3 months. In the not-too-distant future, MND will deprive him of his ability to talk and walk. 

But for now, we’re focusing on the present. 

While family and friends are devastated by the news, we’re all collectively passionate about helping Rob live his best life. 

Rob and his wife Louise were lucky to meet at school when they were just 14, after 19 happy years together they have just had their first child on 31st May.

Rob and Louise recently moved back to Runcorn where he grew up. Luckily for everyone, it means he is closer to his friends and family for the all important support that he will need.

They will both need to make some big changes to their daily lives; not just support Rob, but to welcome their first child into their home, too. We’re looking for everyone to rally together to help ease the pressure on this new family, so they can enjoy the precious time they have together with as little financial stress as possible.

We’ve put this page together to help Rob live his best life. We want to be able to help with some of the practical changes Rob and Louise will need to make as his condition gets worse.

Any support you can give would go towards ensuring that Rob has:

> Mobility aids that can keep him independent and able to visit friends and family for longer e.g. slimline electric wheelchair that’s accessible to use in more locations and portable ramps to gain access.

> House adaptations to keep him as independent as possible and stay in his own home with his family.

> Invest in the latest communication technology as it becomes available and keep him connected. We are currently looking into banking his voice so he can still be heard in his own words.

> Fund any alternative therapies we are looking into that can help delay or make his condition more manageable e.g. acupuncture, stem cell treatments.

> Fund any private medication options (UK only has one approved drug Riluzole that slightly prolongs life by months, USA has another approved drug Radicava that can slow symptom progression by 33%, we are looking to see if it’s possible to somehow purchase for use in the UK).

> Fund any travel to clinical trials UK or abroad (we have registered Rob for several trials, the USA tends to have more groundbreaking trials often then coming to the UK in the second or third trial phase, time is the essence with trials as they often want participants to have had symptoms for less than 2 years, also the earlier any delaying of disease progression can happen the more mobility Rob would maintain).

Rob is funny and witty, with the driest sense of humour known to man. A huge motorsport fan in F1 and Speedway, and a keen sim racer. He deserves to enjoy the time he has left doing the things he loves, with the people who love him.  

We hope that Rob, like some other MND sufferers, can live for a few more years from now. We are, however, conscious of the reality of this horrible disease and how it can take people from us so quickly.  

That’s why we need everyone to pull together so Rob can make the most out of his life. There really is no time like today. 

For this incredible young man and his new family, let’s raise as much as we can to make a real difference.