Cyro's MND Conquest
Donation protected
Please support my identical twin brother, Cyro Dell, in his conquest against Motor Neurone Disease.
This is his story...
It started with a trip in mid 2017… and then some lost balance…”geez I must be pretty unfit or just getting old” he told me. It was only in February 2017 that we completed a 65km walk/run for charity.
Then BANG!! On July 23 2017, he snapped his ankle getting a lamb roast out of the oven – even Tom Cruise could not save him.
Fast forward to September 2017 he thought it was a good idea to see a team of Neurologists on our birthday.
Then KA-BOOM!! – a diagnosis of Motor Neuron Disease at 44!! After weeks of testing and no answers
MND is a cruel and hideous disease – his neurologist, Professor Rowe, calls it ‘the worst of the worst’!! It impacts not only over 2,000 Australians but their families, friends, medical teams and support staff.
While he passes his second year of riding roughshod with ‘The Beast’(MND) please help my brother and his family (wife Cath and their two boys aged 7 & 5) try any medical treatment that shows promise and to have as much quality time as possible with family holidays and as much fun as well.
(Cyro's abridged image from the movie "Dr Strangelove... ")
Currently, he is conducting his own private drug trial (under the supervision of Professor Rowe – a world leader in MND research) using the anti-retro viral HIV drug called Triumeq. Unfortunately, Cyro is not eligible for most formal clinical trials as he is beyond the two year diagnosis window. But there is hope as his neurologist has given a private prescription to allow him a chance to access Triumeq but at cost of $890 per month. He has been on other trials which showed some promise but he reacted adversely to the drug dosage.
While this is not yet a recognised treatment or a cure, this is something he cannot but give it a go!!
Cath, his ever-loving partner of the last 20 years, when not caring for their boys, caring for him and working, spends every spare minute doing her own MND research, reviewing scientific papers, investigating drug trials and supplements. This is so Cyro does not have to be exposed to more information about this cruel and hideous disease.
With this page I am appealing to our family and friends to help Cyro, Cath and their boys in anyway you can.
By supporting them you could ease the enormous strain Cyro’s illness is having on his family.
This will help with:
* ongoing medicine and specialist costs
* sourcing a wheelchair accessible vehicle
* ongoing drug treatments – Triumeq $890 per month, Riluzole $40 per month, Nexium $30 a month
* sourcing specialised exercise equipment ie MOTOmed (to use at home)
* yes Cyro is on the NDIS but it is regulated and does not cover medical costs, prescription costs, supplements, mortgage payments, utility bills or living expenses
* Cath could scale back her work hours to spend more time just being a great mum for Jonty and Lachy and continue being a wonderful wife – this would be priceless for them.
This is his story...
It started with a trip in mid 2017… and then some lost balance…”geez I must be pretty unfit or just getting old” he told me. It was only in February 2017 that we completed a 65km walk/run for charity.
Then BANG!! On July 23 2017, he snapped his ankle getting a lamb roast out of the oven – even Tom Cruise could not save him.
Fast forward to September 2017 he thought it was a good idea to see a team of Neurologists on our birthday.
Then KA-BOOM!! – a diagnosis of Motor Neuron Disease at 44!! After weeks of testing and no answers
MND is a cruel and hideous disease – his neurologist, Professor Rowe, calls it ‘the worst of the worst’!! It impacts not only over 2,000 Australians but their families, friends, medical teams and support staff.
While he passes his second year of riding roughshod with ‘The Beast’(MND) please help my brother and his family (wife Cath and their two boys aged 7 & 5) try any medical treatment that shows promise and to have as much quality time as possible with family holidays and as much fun as well.
(Cyro's abridged image from the movie "Dr Strangelove... ")Currently, he is conducting his own private drug trial (under the supervision of Professor Rowe – a world leader in MND research) using the anti-retro viral HIV drug called Triumeq. Unfortunately, Cyro is not eligible for most formal clinical trials as he is beyond the two year diagnosis window. But there is hope as his neurologist has given a private prescription to allow him a chance to access Triumeq but at cost of $890 per month. He has been on other trials which showed some promise but he reacted adversely to the drug dosage.
While this is not yet a recognised treatment or a cure, this is something he cannot but give it a go!!
Cath, his ever-loving partner of the last 20 years, when not caring for their boys, caring for him and working, spends every spare minute doing her own MND research, reviewing scientific papers, investigating drug trials and supplements. This is so Cyro does not have to be exposed to more information about this cruel and hideous disease.
With this page I am appealing to our family and friends to help Cyro, Cath and their boys in anyway you can.
By supporting them you could ease the enormous strain Cyro’s illness is having on his family.
This will help with:
* ongoing medicine and specialist costs
* sourcing a wheelchair accessible vehicle
* ongoing drug treatments – Triumeq $890 per month, Riluzole $40 per month, Nexium $30 a month
* sourcing specialised exercise equipment ie MOTOmed (to use at home)
* yes Cyro is on the NDIS but it is regulated and does not cover medical costs, prescription costs, supplements, mortgage payments, utility bills or living expenses
* Cath could scale back her work hours to spend more time just being a great mum for Jonty and Lachy and continue being a wonderful wife – this would be priceless for them.
Organizer
Elon Dell
Organizer