Austin's Backyard Wish
Donation protected
Austin LOVES to be outside, running around and playing with friends. Right now Austin is not able to do that safely because of the nature of his backyard.
With the money from Childrens Wish and this GoFundMe we will be making his backyard fully accessible for him and his friends.
Please read his story below -- we appreciate anything you are able to contribute, even if it is just a high five, smile or well wishes!
We will be posting photos of plans, progress and Austin updates along the way!!
Austin is a dynamic and energetic five year old who loves to be engaged with the world around him. From hockey, soccer and NASCAR to driving around the city looking for emergency vehicles and busses, or plain old hanging out with friends, Austin enjoys consuming all kinds of sensory input.
Thanks to mommy (Sue) and daddy (Shawn) and his best friend Alanna, he gets to experience all of these things and many other things that kids his age get to participate in. Over the past year Alanna has enabled Austin to try things like bowling, skiing, swimming and skipping rope as well as independent play such as going down the slide, walking up and down stairs and tree climbing! Austin just LOVES to be with people. He is sometimes fearful of trying new and different things but will almost always give new things a try, especially if he sees someone his is familiar with doing it!
Although Austin seems like a very typical five year old, he is quite different. He is closer two years in age in terms of development Austin only learned to walk at four years. He is small for his age and is functionally non-verbal. His young life is a story of its own and quite a rollercoaster. When Austin was two months old he woke up one morning screaming with seizure like symptoms. Mom took him to the Children’s Hospital of Eastern Ontario (CHEO) where they performed a number of tests, learning that his body was in a state of famine. Over a couple weeks at CHEO it was identified that Austin had a severe milk protein intolerance. The next couple months Austin had been prescribed a number of different milk substitutes and yet barely gaining any weight and had developed poor muscle tone. Austin was having trouble passing stool and would vomit at the sight of food. It became so difficult for his little system to process nutrients he built up a disdain of oral feeding.
Unfortunately at eight months Austin stopped eating all together and was sent back to CHEO with a diagnosis of failure to thrive with hypotonia and microcephaly. More tests ensued and a nasogastric (NG) tube was inserted into his nose to supplement his nutrition and eventually after 12 weeks of the NG tube, he had surgery for the insertion of a gastrostomy (G) tube into his belly to ensure nutrition and reduce the level of discomfort of having a plastic tube shoved down his nose and throat not to mention the risk of Austin pulling it out.
It was identified that during that stay at CHEO that they discovered two cysts on his brain, which were misdiagnosed as germinoma brain cancer. Mom and Dad were devastated but at least thought they had an answer to the monster the family was fighting and why Austin had so many struggles.
Miraculously a month before Austin’s first birthday Mom and Dad received word from Sick Kids in Toronto that the MRI was misread and Austin did not have germinoma. It was like he was born again but still, no answers to why Austin’s had problems with the basics of life.
Austin continued to struggle with stability, coordination and strength. He worked tirelessly to learn the life skills that are seen as simple tasks. He used a wheelchair and a walker for the first four years of his life. Now he uses his wheelchair only for long distances or when the risk of over stimulation is high. The wheelchair gives him the safety and confidence to navigate these situations and is just another tool in his toolbox.
Finally, in March 2017 at the age of four, he was officially diagnosed with Wiedemann-Steiner Syndrome (WSS). WSS is a rare genetic disorder that causes developmental delay, short stature, hypotonia and intellectual disability. This condition is caused by mutations in the KMT2A gene, also known as the MLL gene. It is inherited in an autosomal dominant manner.
It is believed that there are less than 500 people worldwide with this syndrome and only approximately 12 have been identified in Canada. Because of the rarity of WSS there is limited information about the long term health of individuals with WSS. Learning the diagnosis was an important milestone for Austin’s family. With a diagnosis they could now reach out to other families in Canada and around the world who have been effected allowing the ability to share stories, advice and support one another. Austin’s mother and father have been fortunate enough to be able to connect with other families in the region as there are a WSS family in Ottawa and one in Peterborough. Austin’s mom says, “The diagnosis has made brought some relief, allowing us to talk to families, doctors and other specialists for advice and support.”
The diagnosis has linked Austin and his family up with Dovercourt Recreation Centre and their Inclusion program. Austin had an individual accommodation plan arranged that provided a one to one support worker. Having first started in week long camps, Austin now attends Dovercourt five days a week. He gets to attend swim lessons, the afterschool program and hanging out with Alanna and WAVE/ALIVE apprentices which is a day program for adults with special needs. He gets to spend his time there working on improving his strength, coordination, mobility and communication skills. His family love being able to see Austin flourish in this inclusive setting. With the advice given by the WSS community, doctors and other specialists, Austin’s support system have set a myriad of short and long term goals for his development.
In the next year Austin will be receiving an augmentative communication device so he will be able to better communicate his needs and wants in a more effective manner. He has also just got set up with his first bike and will be hitting the streets as soon as it arrives so watch out! The family’s goals for Austin this year is to expose him to as much of life as they can so he is able to actively participate within his social community and continue to grow and hit his unique milestones.
Austin’s wish is for an accessible backyard makeover so that he has a safe space for him and his friends and family to play and be outside. Because of Austin’s syndrome, he does not have the awareness or coordination to be safe in a typical playground. The impact of nature and of Austin being outdoors is something he really benefits from immensely.
We thank you so much for your support !!!!
Sue, Shawn, Austin and Alanna
With the money from Childrens Wish and this GoFundMe we will be making his backyard fully accessible for him and his friends.
Please read his story below -- we appreciate anything you are able to contribute, even if it is just a high five, smile or well wishes!
We will be posting photos of plans, progress and Austin updates along the way!!
Austin is a dynamic and energetic five year old who loves to be engaged with the world around him. From hockey, soccer and NASCAR to driving around the city looking for emergency vehicles and busses, or plain old hanging out with friends, Austin enjoys consuming all kinds of sensory input.
Thanks to mommy (Sue) and daddy (Shawn) and his best friend Alanna, he gets to experience all of these things and many other things that kids his age get to participate in. Over the past year Alanna has enabled Austin to try things like bowling, skiing, swimming and skipping rope as well as independent play such as going down the slide, walking up and down stairs and tree climbing! Austin just LOVES to be with people. He is sometimes fearful of trying new and different things but will almost always give new things a try, especially if he sees someone his is familiar with doing it!
Although Austin seems like a very typical five year old, he is quite different. He is closer two years in age in terms of development Austin only learned to walk at four years. He is small for his age and is functionally non-verbal. His young life is a story of its own and quite a rollercoaster. When Austin was two months old he woke up one morning screaming with seizure like symptoms. Mom took him to the Children’s Hospital of Eastern Ontario (CHEO) where they performed a number of tests, learning that his body was in a state of famine. Over a couple weeks at CHEO it was identified that Austin had a severe milk protein intolerance. The next couple months Austin had been prescribed a number of different milk substitutes and yet barely gaining any weight and had developed poor muscle tone. Austin was having trouble passing stool and would vomit at the sight of food. It became so difficult for his little system to process nutrients he built up a disdain of oral feeding.
Unfortunately at eight months Austin stopped eating all together and was sent back to CHEO with a diagnosis of failure to thrive with hypotonia and microcephaly. More tests ensued and a nasogastric (NG) tube was inserted into his nose to supplement his nutrition and eventually after 12 weeks of the NG tube, he had surgery for the insertion of a gastrostomy (G) tube into his belly to ensure nutrition and reduce the level of discomfort of having a plastic tube shoved down his nose and throat not to mention the risk of Austin pulling it out.
It was identified that during that stay at CHEO that they discovered two cysts on his brain, which were misdiagnosed as germinoma brain cancer. Mom and Dad were devastated but at least thought they had an answer to the monster the family was fighting and why Austin had so many struggles.
Miraculously a month before Austin’s first birthday Mom and Dad received word from Sick Kids in Toronto that the MRI was misread and Austin did not have germinoma. It was like he was born again but still, no answers to why Austin’s had problems with the basics of life.
Austin continued to struggle with stability, coordination and strength. He worked tirelessly to learn the life skills that are seen as simple tasks. He used a wheelchair and a walker for the first four years of his life. Now he uses his wheelchair only for long distances or when the risk of over stimulation is high. The wheelchair gives him the safety and confidence to navigate these situations and is just another tool in his toolbox.
Finally, in March 2017 at the age of four, he was officially diagnosed with Wiedemann-Steiner Syndrome (WSS). WSS is a rare genetic disorder that causes developmental delay, short stature, hypotonia and intellectual disability. This condition is caused by mutations in the KMT2A gene, also known as the MLL gene. It is inherited in an autosomal dominant manner.
It is believed that there are less than 500 people worldwide with this syndrome and only approximately 12 have been identified in Canada. Because of the rarity of WSS there is limited information about the long term health of individuals with WSS. Learning the diagnosis was an important milestone for Austin’s family. With a diagnosis they could now reach out to other families in Canada and around the world who have been effected allowing the ability to share stories, advice and support one another. Austin’s mother and father have been fortunate enough to be able to connect with other families in the region as there are a WSS family in Ottawa and one in Peterborough. Austin’s mom says, “The diagnosis has made brought some relief, allowing us to talk to families, doctors and other specialists for advice and support.”
The diagnosis has linked Austin and his family up with Dovercourt Recreation Centre and their Inclusion program. Austin had an individual accommodation plan arranged that provided a one to one support worker. Having first started in week long camps, Austin now attends Dovercourt five days a week. He gets to attend swim lessons, the afterschool program and hanging out with Alanna and WAVE/ALIVE apprentices which is a day program for adults with special needs. He gets to spend his time there working on improving his strength, coordination, mobility and communication skills. His family love being able to see Austin flourish in this inclusive setting. With the advice given by the WSS community, doctors and other specialists, Austin’s support system have set a myriad of short and long term goals for his development.
In the next year Austin will be receiving an augmentative communication device so he will be able to better communicate his needs and wants in a more effective manner. He has also just got set up with his first bike and will be hitting the streets as soon as it arrives so watch out! The family’s goals for Austin this year is to expose him to as much of life as they can so he is able to actively participate within his social community and continue to grow and hit his unique milestones.
Austin’s wish is for an accessible backyard makeover so that he has a safe space for him and his friends and family to play and be outside. Because of Austin’s syndrome, he does not have the awareness or coordination to be safe in a typical playground. The impact of nature and of Austin being outdoors is something he really benefits from immensely.
We thank you so much for your support !!!!
Sue, Shawn, Austin and Alanna
Organizer
Sioux White
Organizer
Ottawa, ON
