Rob’s little Princesses! Rob Burrow’s adorable daughters practice their curtsies as Prince William visits Headingley Stadium to present rugby legend with his CBE for raising awareness of Motor Neurone Disease


By Elmira Tanatarova and Rebecca English Royal Editor At The Daily Mail

15:12 11 Jan 2024, updated 16:10 11 Jan 2024



This is the adorable moment Rob Burrow’s daughters readied themselves for meeting royalty – as the Prince of Wales today made a visit Headingley Stadium to present the rugby legend with his CBE for raising awareness of Motor Neurone Disease (MND).

A sweet video shared by BBC Breakfast on X showed Macy, 11, and Maya, eight, rehearsing a curtsy ahead of the exciting encounter.

Both girls donned smart navy dresses, perfect for today’s occasion.

‘I’m really excited to meet Prince William,’ Macy told the camera. ‘He is a future king, it’s an honour to meet him.’

‘Me too,’ little Maya agreed, smiling in the video. 

This is the adorable moment Rob Burrow’s daughters readied themselves for meeting royalty – as the Prince of Wales today made a visit Headingley Stadium to present the rugby legend with his CBE for raising awareness of Motor Neurone Disease

The Prince of Wales also appeared to be in high spirits as he greeted the nationally revered rugby legend, 41, and his friend Kevin Sinfield – who touched the country’s heart when he carried his friend over the finishing line of the inaugural Rob Burrow Leeds Marathon in May.

A video showed William approaching the pair as the royal admitted he didn’t know ‘how much of a surprise it is that he’s there’.

The Prince then added that it was ‘very nice to finally see’ Rob face to face. 

The sporting legend later said that he was proud to accept the CBE on behalf of the MND community. 

‘Days like these allow us to keep the spotlight on the disease,’ he added.

‘It was wonderful that His Royal Highness was able to come to Headingley to see us and very much appreciated. It was lovely to talk to him and for him to meet my family.’

William also presented Rob with the CBE – still in its box – as he lauded the former athlete’s work.

‘Thank you and congratulations – for all the inspirational work you’ve done, Rob’ the Prince said. ‘You’ve been amazing, you really have and everyone’s so proud of you. We’ve all been following your case. You’ve changed so many people’s lives with MND with what you’ve done. We’re all so proud of you.’

Pictured: The Prince of Wales William meeting former rugby league player Rob Burrow to congratulate him for raising awareness of Motor Neurone Disease
A sweet video shared by BBC Breakfast showed Macy, 11, and Maya, eight, rehearsing a curtsy ahead of the exciting encounter
Rob Burrow and his friend Kevin showing their CBEs at Headingley Stadium in Leeds, where Prince William visited today
Rob and his family pictured with Prince William, who presented the sporting legend with a CBE today
Rob and Kevin enjoyed a chat with William, who praised the pair for their fundraising efforts and ‘brotherly bond’
William appeared in high spirits as he spent time with the rugby icon at Headingley Stadium  today

The royal also placed the CBE around Kevin’s neck and praised his ‘brotherly bond’ with Rob. 

‘The relationship between you two has been so amazing to watch,’ William continued. ‘An inspiration for everyone to kind of go like “this is how we help each other”.’ 

While touring the stadium, Rob told the royal it was ‘an honour’ to meet him and revealed that his daughters have been practicing their curtsies ahead of today.

He also recounted recently meeting Zara Tindall – William’s cousin – and her husband – for his podcast, where Mike Tindall revealed that the Prince of Wales is nicknamed One Pint Willy ‘because he’s not the best of drinkers’.

‘You got the nicknames out of him,’ William laughed. ‘He apologised to me for that!’ 

Rob, a former captain of the Leeds Rhinos and member of the British rugby league teams, has MND.

Inspired by Rob’s bravery in devoting the rest of his life to raise awareness and funds for those affected by the incurable, merciless degenerative condition affecting the brain and nerves, Kevin has helped him raise more than £15 million for charity through a series of staggering endurance challenges.

Today their efforts are being recognised by the Prince of Wales, who travelled to the Leeds Rhinos ground in Headingly, West Yorkshire, to meet both men and their families.

The Prince of Wales also appeared to be in high spirits as he greeted the nationally revered rugby legend, 41, and his friend Kevin Sinfield
Kensington Palace said William wanted to personally thank and congratulate them on their remarkable efforts

Kensington Palace said William wanted to personally thank and congratulate them on their remarkable efforts.

His wife, the Princess of Wales, is patron of The Rugby Football League, while his aunt, Princess Anne, is royal patron of the Motor Neurone Disease Association (MNDA).

William was expected to speak with Rob and Kevin about their playing days at Leeds Rhinos, where they were teammates from 2001 to 2015 and won a slew of trophies together including three World Club titles. 

The Prince then plans to join a conversation with both men and their families to hear more about their efforts over the past four years to champaign and support those impacted by MND across the UK and Ireland.

Rob, a married father of three young children, is now unable to talk but can articulate his thoughts through Eyegaze, a device which translates blinks into letters and then builds them into words on a screen.

MND sees messages from motor neurones in the brain and the spinal cord, which tell the body’s muscles what to do, gradually stop working.

This causes the muscles to weaken, stiffen and waste.

Symptoms progress at varying speeds but sufferers will often experience problems in walking, talking, eating, drinking and breathing.

William is expected to speak with Rob and Kevin about their playing days at Leeds Rhinos, where they were teammates from 2001 to 2015 and won a slew of trophies together including three World Club titles
Inspired by Rob’s bravery in devoting the rest of his life to raise awareness and funds for those affected by MND , Kevin (right) has helped him raise more than £15 million for charity through a series of staggering endurance challenges

MND is brutal and life-shortening.

While some can survive for many years, such as Professor Stephen Hawking who lived with the condition for 55 years, for many the prognosis is less than five years. There is no cure and just one licensed drug in the UK which only has a ‘modest effect’ in slowing down progress of the disease.

Charities such as the Motor Neurone Disease Association work to support sufferers and their families, particularly with managing their quality of life, as well fund research to find a cure for the disease.

MND affects up to 5,000 adults in the UK at any one time – one in 300 people will be affected during their lifetime – and is more prevalent in people over the age of 50.

Rob was diagnosed with the disease in 2019 shortly after retiring from professional sport and was given just two years to live. William pictured with Rob and Kevin

Rob was diagnosed with the disease in 2019 shortly after retiring from professional sport and was given just two years to live.

Since then he has defiantly fought its progress and devoted himself to fund-raising for a range of MND charities, as well as building a dedicated MND centre at the Seacroft Hospital in Leeds.

In his honour Kevin has tasked himself with several challenges for the cause: running seven marathons in seven days, 101 miles in 24 hours and then seven ultra-marathons in seven days.

He recently told the Daily Mail: ‘The very best of us are diagnosed with MND. They are fighters. They have unbelievable spirit. But it’s so difficult for family and friends because what MND does to the body is so gruesome and tragic and some people can’t face it.

The Prince then plans to join a conversation with both men and their families to hear more about their efforts over the past four years to champaign and support those impacted by MND across the UK and Ireland.  Pictured with Rob
William pictured meeting Rob, his family, and friend Kevin at Headingley Stadium in Leeds today
William pictured posing with Kevin and his wife, Jayne, after presenting him with a CBE at the stadium today
Kevin Sinfield touched the country’s heart when he carried his friend over the finishing line of the inaugural Rob Burrow Leeds Marathon in May
Both Kevin and Rob received CBEs in the 2024 New Years Honours List. Rob pictured playing rugby in 2020
Pictured: Rob and wife Lindsey during day one of 7 in 7 in 7 Challenge from Headingley to York Minster last year

Motor Neurone Disease (ALS): No known cure and half of sufferers live just three years after diagnosis

 

Treatment



There is no cure for MND and the disease is fatal, however the disease progresses at different speeds in patients.

People with MND are expected to live two to five years after the symptoms first manifest, although 10 per cent of sufferers live at least 10 years. 

History 

The NHS describes motor neurone disease (MND) as: ‘An uncommon condition that affects the brain and nerves. It causes weakness that gets worse over time.’

The weakness is caused by the deterioration of motor neurons, upper motor neurons that travel from the brain down the spinal cord, and lower motor neurons that spread out to the face, throat and limbs. 

It was first discovered in 1865 by a French neurologist, Jean-Martin Charcot, hence why MND is sometimes known as Charcot’s disease. 

In the UK, Amyotrophic Lateral Sclerosis (ALS) is referred to as Motor Neurone Disease, while in the US, ALS is referred to as a specific subset of MND, which is defined as a group of neurological disorders.

However, according to Oxford University Hospitals: ‘Nearly 90 per cent of patients with MND have the mixed ALS form of the disease, so that the terms MND and ALS are commonly used to mean the same thing.’ 

Symptoms

Weakness in the ankle or leg, which may manifest itself with trips or difficulty ascending stairs, and a weakness in the ability to grip things.

Slurred speech is an early symptom and may later worsen to include difficulty swallowing food.

Muscle cramps or twitches are also a symptom, as is weight loss due to leg and arm muscles growing thinner over time.  

Diagnosis

MND is difficult to diagnose in its early stages because several conditions may cause similar symptoms. There is also no one test used to ascertain its presence.

However, the disease is usually diagnosed through a process of exclusion, whereby diseases that manifest similar symptoms to ALS are excluded. 

Causes

The NHS says that MND is an ‘uncommon condition’ that predominantly affects older people. However, it caveats that it can affect adults of any age.

The NHS says that, as of yet, ‘it is not yet known why’ the disease happens. The ALS Association says that MND occurs throughout the world ‘with no racial, ethnic or socioeconomic boundaries and can affect anyone’.

It says that war veterans are twice as likely to develop ALS and that men are 20 per cent more likely to get it.  

Lou Gehrig was one of baseball’s preeminent stars while playing for the Yankees between 1923 and 1939. Known as ‘The Iron Horse,’ he played in 2,130 consecutive games before ALS forced him to retire. The record was broken by Cal Ripken Jr. in 1995

Lou Gehrig’s Disease

As well as being known as ALS and Charcot’s disease, MND is frequently referred to as Lou Gehrig’s disease.

Lou Gehrig was a hugely popular baseball player, who played for the New York Yankees between 1923 and 1939.

He was famous for his strength and was nicknamed ‘The Iron Horse’. 

His strength, popularity and fame transcended the sport of baseball and the condition adopted the name of the sportsman. 

He died two years after his diagnosis.  

‘I felt helpless. What could I do for Rob besides being a good mate? I knew I want to be there for him and try to show him that I would be, no matter what.

‘He’s an inspiration. He inspires me to be better, to take risks, to do the right thing as far as I can. Our friendship is unconditional. And I know he would have done the same for me.’

Rob is equally lost in admiration for his friend, saying: ‘What sort of friend would put his life at risk for me, forgoing sleep, spending time apart from his family and risking permanent injury or worse? True friends like Kevin are always with their friends even when times are tough.

‘Kevin and I have been shoulder to shoulder from day one, fighting this battle against MND.’

Both Kevin and Rob received CBEs in the 2024 New Years Honours List.

Reference

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