Olie's Everest 2020
Donation protected
My son, Ted, was diagnosed with Phelan-McDermid Syndrome when he was 2 years old. The doctors knew very little about this syndrome, in fact their advice to us was ‘Google it!’ He's now 10 and the doctors are still using Google as their main educational tool.
Essentially P-MS is the deletion of part of Chromosome 22 (22q13). This manifests as symptoms including intellectual disability, delayed or absent speech, autism, heart problems, seizures and gastrointestinal problems. P-MS can cause severely complex health issues resulting in the death of sufferers.
Ted has an intellectual and physical disability, can't talk and suffers from autism.
The simple practicalities of living with a PMS child are hard. Children with Phelan-McDermid Syndrome can and do survive on 2 hours sleep a night, parents unfortunately cannot. Hospitals are rarely on the doorstep, one family has a 12 hour round trip to make hospital visits while others have to fly from small country towns to city hospitals. Children with Phelan-McDermid Syndrome succumb to illness more often than typical children. Personally, I’ve spent weeks in hospital with Ted, while family life has to continue for my other 3 children. It is very challenging to keep the wheels of our family turning.
Currently, there are approximately2000 diagnosed cases worldwide and only around 100 here in Australia and New Zealand. Needless to say,
P-MS is classed as a rare syndrome and as such has very limited funding.
In 2017 a group of my closest friends decided to ride from Sydney to Brisbane to raise funds and push Phelan-McDermid Syndrome into the news. ‘Wheeling for Phelan' was born over a couple of beers in our local bike shop.
We felt very strongly that the ride should be very difficult to reflect the struggles of the PMS community so the decision was made to ride inland, following the famous Thunder Bolts Way through key inland towns and cities. It’s a journey of around 1100km with a staggering 14000m of climbing! Our team of 5 made the ride, leaving Sydney on the 23rd of July and getting back to Brisbane the following Friday 28th. The welcome we received from family, friends and our extended PMSF family when we rolled into Suncorp Stadium was fantastic!
So the first two editions of W4P have been a success! We've raised money, been on the Channel 7 news several times and ridden from Sydney to Brisbane twice.
After a brief hiatus in 2019 we are back for 2020 but with a slightly different structure due to CVD19. Instead of the traditional Sydney to Brisbane ride we will be doing a series of smaller events throughout the year.
We've made a huge difference to families through out Australia but now we need your help to do it all again. This year we hope to raise further funds to continue to improve the lives of those with Phelan-McDermid Syndrome.
Funds raised will be use to contribute to research, send a member of W4P to the International PM-S Conference and provide direct funding to families struggling with PM-S children.
Essentially P-MS is the deletion of part of Chromosome 22 (22q13). This manifests as symptoms including intellectual disability, delayed or absent speech, autism, heart problems, seizures and gastrointestinal problems. P-MS can cause severely complex health issues resulting in the death of sufferers.
Ted has an intellectual and physical disability, can't talk and suffers from autism.
The simple practicalities of living with a PMS child are hard. Children with Phelan-McDermid Syndrome can and do survive on 2 hours sleep a night, parents unfortunately cannot. Hospitals are rarely on the doorstep, one family has a 12 hour round trip to make hospital visits while others have to fly from small country towns to city hospitals. Children with Phelan-McDermid Syndrome succumb to illness more often than typical children. Personally, I’ve spent weeks in hospital with Ted, while family life has to continue for my other 3 children. It is very challenging to keep the wheels of our family turning.
Currently, there are approximately2000 diagnosed cases worldwide and only around 100 here in Australia and New Zealand. Needless to say,
P-MS is classed as a rare syndrome and as such has very limited funding.
In 2017 a group of my closest friends decided to ride from Sydney to Brisbane to raise funds and push Phelan-McDermid Syndrome into the news. ‘Wheeling for Phelan' was born over a couple of beers in our local bike shop.
We felt very strongly that the ride should be very difficult to reflect the struggles of the PMS community so the decision was made to ride inland, following the famous Thunder Bolts Way through key inland towns and cities. It’s a journey of around 1100km with a staggering 14000m of climbing! Our team of 5 made the ride, leaving Sydney on the 23rd of July and getting back to Brisbane the following Friday 28th. The welcome we received from family, friends and our extended PMSF family when we rolled into Suncorp Stadium was fantastic!
So the first two editions of W4P have been a success! We've raised money, been on the Channel 7 news several times and ridden from Sydney to Brisbane twice.
After a brief hiatus in 2019 we are back for 2020 but with a slightly different structure due to CVD19. Instead of the traditional Sydney to Brisbane ride we will be doing a series of smaller events throughout the year.
We've made a huge difference to families through out Australia but now we need your help to do it all again. This year we hope to raise further funds to continue to improve the lives of those with Phelan-McDermid Syndrome.
Funds raised will be use to contribute to research, send a member of W4P to the International PM-S Conference and provide direct funding to families struggling with PM-S children.
Organizer
Oliver Elsworth
Organizer
Bridgeman Downs, QLD