Hi, my name is Nathan, I am currently 32years old and I have a rare disease called Pelizaeus-Merzbacher Disease as well as Cerebral Palsy. This page has been created by my sister Danielle and my support team from Holistic Horizons Disability Support Services Queensland.
My disease is an inherited condition that reduces neurological function involving the brain and spinal cord (central nervous system) that primarily affects males.
I started walking late in my development, which only lasted a few years until I was confined to a wheel chair for the rest of my life as the Cerebral Palsy took hold.
I am able to stand on my legs with the assistance of a walker for a very short period of time however my leg muscles are very stiff and unable to bend easily. I live with constant abdominal pain due to a slow functioning digestive system.
My father has recently gone through cancer and during the months of my treatment, I have had to have a place to live and be cared for 24/7. This is extremely costly and made me realise that one of my goals is to buy my own house to live in for my future for when my dad is no longer able to care for me.
I have had a life long goal to ride a long distance on my hand cycle. I begun training for this, under the careful guidance of my support worker Matt in 2020. I gained strength every week training with Matt on my custom built hand cycle.
I completed and achieved one of my life goals which was a big ride from NOOSA to REDCLIFFE over 6 days from the 8th to 13th March 2021.
I have set myself a new goal to ride from KINGAROY to REDCLIFFE in June this year, 2022. I will be leaving South Burnett Rail Trail on Wednesday 29th June at 9am, and arriving into Suttons Beach, Marine Parade, Redcliffe on Saturday 02nd July between 11.30am to 3.30pm for a celebration of my ride acheivement. ALL WELCOME to join me for a BBQ, DRINKS, RAFFLES and LIVE MUSIC. Can't wait to see you all there.
I need to keep my upper body strength up, as it makes a huge difference to my independence of getting around and to increase my quality of life to do the things I love to do.
My main goal is to raise awareness for my very rare genetic terminal disease, there is not much research about it and no government funding to support finding a cure for it.
I want to inspire people to never give up, no matter what challenges are thrown at them in life.
I thank you all so much for anyone who supports me or has supported me in the past for my rides. They are very important to me, as they help me to keep going and even to one day afford to purchase myself an e-bike, which will assist me at challenging terrains and steep hills.
I donate 10% of all my RIDE FOR NATHAN Fundraisers to Leukodystrophy Australia, to help them to one day find a cure for Pelizaeus-Merzbacher Disease.
Please join me for my next big ride, KILCOY to REDCLIFFE and ride with me on one of the days. I would love to meet you!
"WHEELS ARE MY LIFE AND WHEELS GIVE ME FREEDOM"
Love You All,
ps. if you would like to help, support or sponsor my ride in any way, please email my event organiser:- [email redacted].au or phone Julie on 0421 470 160
Thank you !
DonationsSee top donations
- Matthew Bell
- Toms' Confectionery Warehouse Adiel Ben-Karmona
- LeeAnne n Nigal Reinbott
- Josh Ankers