SMAsh It For Sammy 2019
Donation protected
In April 2017, our Sammy was diagnosed with a rare genetic condition called Spinal Muscular Atrophy (SMA), a degenerative motor neuron disease, for which, to date there is NO KNOWN CURE. It is a genetic condition whereby the nerves of the spinal cord (anterior horn cells) deteriorate, atrophy (waste away) and eventually die. Put simply, SMA not only wastes away the muscles you see like arms and legs, but internal muscles used for coughing, swallowing and breathing.
Sammy’s birth and early months were as you would expect, he smiled, he laughed, he rolled over (even earlier than our first born) and he took his first step at 11months. He had a ‘cute’ waddle that unfortunately never rectified itself and by 15months became worrying more than ‘cute’. I followed my Mumma instinct and raised my concern to our GP which started a very long road that lead us to an answer we weren’t ready to hear. Sammy was diagnosed with SMA (Type 3) at 20 months of age.
Since his diagnosis in 2017, Sammy has lost motor function to some degree and is no longer able to move to a standing position without help from Mummy, Daddy, his big brother or a nearby table/wall, much like a baby learning to stand for the first time. At the moment Sam is able to walk independently but tires easily and is susceptible to falls when he is tired. Although he currently has use of his legs, as he gets older he is struggling more and more to keep up with his peers. This obviously has a huge impact on his sense of belonging and feelings of inclusion.
We have been incredibly lucky and Sam now has access to a game changing drug which has restored some of Sam's strength and improved his endurance, however it is early days and he still has a lot of difficulty with a range of tasks including simply putting on his own clothes, getting in and out of a car, playing on a play ground etc... things we often take for granted.
Until recently he was still being pushed around in a pram for long distances such as going to the shops or walking his big brother to school. Sam was recently gifted a manual wheelchair from another lovely SMA family, whose child had outgrown the chair. This has given him a newfound sense of freedom however SMA also affects the arms and he can only wheel himself around for a limited time and cannot navigate hills etc... on his own. This means he still needs to be pushed around by myself or his dad or brother. It also means Sammy's little brother cannot go in the pram when Sam is with us.... pushing a pram and a wheelchair at the same time is interesting to watch!
In October this year a team of us will be running the Melbourne Marathon in Sam's honor. When Sam was diagnosed I vowed to always run for him, and take him when I could. Being able to run is a privilege and I never take my body for granted. Everyday is a marathon for our little man but he always gives it a red hot go and always with a smile.
We are hoping to raise money for Sammy's future needs. He recently trialed a portable electric wheelchair (valued a over $9000) and our reality is that he will likely need mobility aides throughout is life. While much of these items can be funded by NDIS, we have no guarantee that our requests for Sam will be approved and often there are significant delays in getting the required equipment through the scheme. An application for this wheelchair was submitted over 2months ago, and we are still waiting for this to be assessed, with the agency unable to provide any time frames around this. This doesn't seem fair for Sam.
When Sam was first diagnosed we felt helpless and devastated that we couldn't do anything to help Sam medically and although he now receives regular treatment, this is not a cure. We do not know what the longevity of this treatment is. Something we know we can do is work to ensure that we are able to support him financially now and into the future. Money raised will be going towards items and experiences we feel are important to Sam that the NDIA deem 'unnecessary'. Sam will have access to basic equipment however we think he deserves better than basic and as his needs increase we would like to be able to purchase a specialized wheelchair that will maximize his independence. We would also love to get a beach wheelchair for him in the future as he loves the beach but at the moment cannot navigate the sand on his own at all. These items are extremely expensive and currently unattainable for us. Any help we receive will also mean that we are able to take time off work to focus on Sam's needs and to provide any additional support he requires. If you'd like to hear more about Sam's story you can check out our Facebook group - 'SMAsh it for Sammy - Our journey with Spinal Muscular Atrophy Type III'
Sammy’s birth and early months were as you would expect, he smiled, he laughed, he rolled over (even earlier than our first born) and he took his first step at 11months. He had a ‘cute’ waddle that unfortunately never rectified itself and by 15months became worrying more than ‘cute’. I followed my Mumma instinct and raised my concern to our GP which started a very long road that lead us to an answer we weren’t ready to hear. Sammy was diagnosed with SMA (Type 3) at 20 months of age.
Since his diagnosis in 2017, Sammy has lost motor function to some degree and is no longer able to move to a standing position without help from Mummy, Daddy, his big brother or a nearby table/wall, much like a baby learning to stand for the first time. At the moment Sam is able to walk independently but tires easily and is susceptible to falls when he is tired. Although he currently has use of his legs, as he gets older he is struggling more and more to keep up with his peers. This obviously has a huge impact on his sense of belonging and feelings of inclusion.
We have been incredibly lucky and Sam now has access to a game changing drug which has restored some of Sam's strength and improved his endurance, however it is early days and he still has a lot of difficulty with a range of tasks including simply putting on his own clothes, getting in and out of a car, playing on a play ground etc... things we often take for granted.
Until recently he was still being pushed around in a pram for long distances such as going to the shops or walking his big brother to school. Sam was recently gifted a manual wheelchair from another lovely SMA family, whose child had outgrown the chair. This has given him a newfound sense of freedom however SMA also affects the arms and he can only wheel himself around for a limited time and cannot navigate hills etc... on his own. This means he still needs to be pushed around by myself or his dad or brother. It also means Sammy's little brother cannot go in the pram when Sam is with us.... pushing a pram and a wheelchair at the same time is interesting to watch!
In October this year a team of us will be running the Melbourne Marathon in Sam's honor. When Sam was diagnosed I vowed to always run for him, and take him when I could. Being able to run is a privilege and I never take my body for granted. Everyday is a marathon for our little man but he always gives it a red hot go and always with a smile.
We are hoping to raise money for Sammy's future needs. He recently trialed a portable electric wheelchair (valued a over $9000) and our reality is that he will likely need mobility aides throughout is life. While much of these items can be funded by NDIS, we have no guarantee that our requests for Sam will be approved and often there are significant delays in getting the required equipment through the scheme. An application for this wheelchair was submitted over 2months ago, and we are still waiting for this to be assessed, with the agency unable to provide any time frames around this. This doesn't seem fair for Sam.
When Sam was first diagnosed we felt helpless and devastated that we couldn't do anything to help Sam medically and although he now receives regular treatment, this is not a cure. We do not know what the longevity of this treatment is. Something we know we can do is work to ensure that we are able to support him financially now and into the future. Money raised will be going towards items and experiences we feel are important to Sam that the NDIA deem 'unnecessary'. Sam will have access to basic equipment however we think he deserves better than basic and as his needs increase we would like to be able to purchase a specialized wheelchair that will maximize his independence. We would also love to get a beach wheelchair for him in the future as he loves the beach but at the moment cannot navigate the sand on his own at all. These items are extremely expensive and currently unattainable for us. Any help we receive will also mean that we are able to take time off work to focus on Sam's needs and to provide any additional support he requires. If you'd like to hear more about Sam's story you can check out our Facebook group - 'SMAsh it for Sammy - Our journey with Spinal Muscular Atrophy Type III'
Fundraising team: SMAsh It For Sammy 2019 (2)
Gillie Ruddell
Organizer
Joyner QLD
Santina Winterkorn
Team member
