Jude de Vos and MND

Cause UK has been helping to tell the heart-breaking stories of the families hit by the cruel disease, motor neurone disease, to help raise awareness for the Leeds Hospitals Charity’s appeal for a new £5m Rob Burrow MND Centre.

This week, we interviewed mum Jude de Vos, who lost her son Jody to MND, and spoke powerfully about her grief. You can read her story in the Yorkshire Evening Post, and the Yorkshire Post 

Jude will be on BBC Radio Leeds on Monday 6th December to talk about how her fundraising is helping her get through her grief by something positive in memory of Jody. See the full press release below on her challenge to climb Ben Nevis.

Grieving Mum to Climb Mountain for Son

Jude de Vos, a retired nurse from Holmfirth, aims to scale Ben Nevis next June in memory of her son who died of motor neurone disease.

Jude is raising funds for the Leeds Hospitals Charity Appeal to build the new Rob Burrow Centre for Motor Neurone Disease in Leeds.

The £5m Appeal aims to create a state-of-the art therapeutic centre for patients and their families. There is currently no cure for motor neurone disease, with 50% of sufferers dying within the first two years of diagnosis.

Jude cared for her son, who died aged 38 in January 2017, with help from district nurses and care staff. His decline was rapid, leaving him wheel-chair bound and unable to speak just a year after his diagnosis. The impact of Jody’s diagnosis and death left Jude feeling suicidal.

Jude said: “There are many people who are experiencing MND in a very lonesome environment, or who are very isolated, and don’t have support. I thought the new Rob Burrow Centre was the perfect cause to fundraise for. Such a place would have made a huge difference to me and to Jody to have had specialist support all in one place. It would have been the best thing, to have felt supported myself.”

Jude had the idea to climb Ben Nevis after joining a walking group in the summer.

Jude said, “I am still here and I have survived. Jody had such a passion for life. He wanted to live so much, so climbing Ben Nevis is a tribute to Jody.”

She connected on Twitter with David Merrick, who is swimming a mile a day, also in aid of the Rob Burrow Centre Appeal, and has agreed to swim a few lengths with him.

Jude said: “It’s given me a new passion. Now, I’m looking forwards, rather than looking back.”

Esther Wakeman, Chief Executive of the Leeds Hospitals Charity for the Rob Burrow Appeal, said: “We are so sad that Jody died from this terrible disease. The new centre will help people like Jude and MND patients come to terms with an MND diagnosis and offer therapeutic care, companionship and support. The Centre will meet the specialist needs of MND patients, their carers, and families. We can’t thank Jude enough for fundraising for the centre in memory of Jody.”

Consultant Neurologist Dr Agam Jung has been leading and developing the Leeds MND service for the last 10 years. Her vision of her team being able to continue delivering high quality care in tranquil surrounds, whilst keeping the specific needs of MND patients, was the seed idea. A comprehensive patient feedback echoed Dr Jung’s vision and this was the start of the journey.

Patients will see consultants from Neurology, Palliative Care, Respiratory medicine alongside a multidisciplinary team of highly skilled professionals.  The vision is for a space that is bright and modern, that has windows and gardens, with spaces for families to be together, or quiet rooms to reflect in after difficult conversations.

Dr Agam Jung said: “We want to provide a safe haven for our patients and their families – a peaceful environment that reiterates to them that they have the best possible care, helping them ‘live in the now’, a serene place that instils hope and courage.”

To donate, go to: Leeds Hospitals Charity: My name is Jude de Vos. I am Fundraising in Memory of Jody, my Son. By Hiking up Ben Nevis for The Rob Burrow MND Centre (enthuse.com)

ENDS

For media enquiries contact clair@causeuk.com 0753 194 8014.

Notes for editors:

About Motor Neurone Disease

Motor neurone disease (MND) affects the nerves – called motor neurones – in the brain and spinal cord. MND is a life-shortening disease with no cure. Although the disease will progress, symptoms can be managed to help achieve the best possible quality of life.

With MND, messages from the motor neurones gradually stop reaching the muscles. This leads the muscles to weaken, stiffen and waste. MND can affect how you walk, talk, eat, drink and breathe. Some people also experience changes to their thinking and behaviour. However, MND affects everyone differently. Not all symptoms will affect everyone, or in the same order. Symptoms also progress at varying speeds, which makes the course of the disease difficult to predict.

MND can affect adults of any age but is more likely to affect people over 50. There is a 1 in 300 risk of being diagnosed with MND. However, the prevalence of a disease is the number of people currently living with that condition. As the progression of MND can be rapid, fewer people are living with this disease than might be expected with a 1 in 300 risk. This means the prevalence is low, with up to 5,000 people living with MND in the UK at any one time. This is why MND is not seen as a common disease.

Source: MND Association

About Leeds Hospitals Charity 

Leeds Hospitals Charity is the charity for Leeds Teaching Hospitals. We support NHS staff to deliver the best care for patients and their families, by raising funds for equipment, services, education and research.

Leeds Hospitals Charity provides support for eight areas which include Leeds General Infirmary, Leeds Children’s Hospital, Leeds Cancer Centre, St James’s University Hospital, Chapel Allerton Hospital, Seacroft Hospital, Wharfdale Hospital and Leeds Dental Institute.

Leeds Hospitals Charity supports NHS staff to deliver the best care for over a million patients and their families each year. Working with local communities, schools and businesses across the city and beyond, each year we provide £5 million in additional funding for Leeds Teaching Hospitals Trust.

https://www.leedshospitalscharity.org.uk/mnd-centre-appeal

About Leeds Teaching Hospitals NHS Trust

Leeds Teaching Hospitals is one the largest and busiest acute hospital trusts in Europe. Every year Leeds Teaching Hospitals provides healthcare and specialist services for people from the city of Leeds, Yorkshire and the Humber and beyond.  We play an important role in the training and

education of medical, nursing and dental students, and are a centre of world-class research and pioneering new treatments.

Leeds Teaching Hospitals has a budget of £1.4 billion and employs around 20,000 people. Last year (2019/2020), the Trust provided over 1,645,000 treatments and episodes of care.

Our care and clinical expertise is delivered from seven hospitals on five sites, and they are all joined by our vision to be the best for specialist and integrated care.

Our staff helped to define the values and behaviours that we should work to, and this has become known as The Leeds Way. This forms the foundation of our culture, our ethos and how we work every day.