- Rugby league’s Rob Burrow was diagnosed with motor neurone disease in 2019
- The Leeds Rhinos legend was given just two years to live as it has inspired many
- Macy, 38, is desperate to help raise Maya, 6, and Jackson, 2
- Burrow hopes a new drug can give him enough time to cure
Rugby league legend Rob Burrow is hoping a new miracle drug could give him the chance to watch his children grow up.
The 38-year-old was diagnosed with motor neuron disease in 2019 and was given just two years to live.
Burrow, married to teenage girlfriend Lindsay, is desperate to help raise Macy, nine, Maya, six, and Jackson, two.
And wheelchair-bound Burrow and his family are hopeful that a new treatment may give him enough time to recover.
Former Leeds Rhinos, England and Great Britain star told sunday mirror: ‘This medicine is my hope to see my children grow up.
‘Without this drug it would be a bleak result. I worry about leaving Lindsay to raise my kids alone – it’s the last thing I want to do.
‘I want my trio to reach 18 and that’s why I live in hope. I am a realist but without hope there is nothing.’
Rob Burrow with his wife Lindsay and daughters at this year’s National Television Awards
Rugby league legends are desperate to help raise Macy, nine, Maya, six, and Jackson, two
Her devoted father, Geoff, 70, searched for the cure on the Internet.
He added: ‘The new drug inspires Rob to get up and move every day. He is dying of MND, living with it. And I’ll help him do it while my body breathes.
‘It’s not just about sustaining Rob’s life, it’s about the potential behind it. I firmly believe that we are touching the distance of cure. This drug seems to have had incredible results and this could be Rob’s chance until a cure is found.
‘We have to beat it – we’re going. I have to believe because I will not allow myself to think any other way. Every day I pray – I don’t know who – and ask that they take my heartbeat and give it to Rob. If he leaves, I won’t be after him very long.’
The 38-year-old was diagnosed with motor neuron disease in 2019 and was given two years to live
What is motor neuron disease?
Motor neuron disease is a rare condition that primarily affects people in their 60s and 70s, but it can affect adults of all ages.
It is caused by a problem with the cells in the brain and the nerves called motor neurons. These cells gradually stop working over time. Don’t know why this happens.
Having a close relative with motor neuron disease, or a related condition called frontotemporal dementia, can sometimes mean that you are more likely to have it. But in most cases it does not run in families.
Early symptoms may include weakness in your ankle or foot, such as making it difficult to walk uphill; slurred speech, difficulty swallowing, weak grip, and gradual weight loss
If you have these symptoms, you should see a GP. They will consider other possible conditions and may refer you to a specialist called a neurologist if necessary.
If a close relative has motor neuron disease or frontotemporal dementia and you are concerned you may be at risk – they may refer you to a genetic counselor to talk about your risk and any tests you may have.
Source: NHS UK
The medicine known as AMX0035 contains two agents that reduce neuronal death and dysfunction.
US trials saw an improvement in life expectancy in 44% of cases. The median life extension was six months but at least one patient was on the drug for 35 months.
Drug company Amilix is considering running Phase 3 trials in Europe, but Geoff expects Boston’s Massachusetts General Hospital, one of 25 US trial centers, to supply the drug.
It will cost ‘thousands’ but the family wants to pay for it from the proceeds from charity events.