Miracle For Jayden
Donation protected
They say it takes a village to raise a child. So what does it take to raise a sick child? What if that disease was slowly taking that child’s life and there was no cure? What does it take to raise that child now?
Jayden is 6 years old and has been diagnosed in January 2020 with a rare genetic disorder called Adreno-leukodystrophy (ALD). It is a disorder characterized by normal development in early childhood, followed by rapid degeneration as the disease ravages the brain leading to blindness, deafness, seizures, and a loss of muscle control. This relentless downward spiral leads to a vegetative state and eventually death, usually occuring 2 to 5 years once diagnosed. Currently, Jayden has lost his hearing and is having trouble swallowing, requiring a suction machine to remove excess saliva, in order to prevent it from entering his lungs. In March 2020, Jayden needed to get a gastronomy tube (G-tube) inserted in his stomach for nutrition and hydration.
Jayden has also started to get seizures and his mobility has been affected to the point where he is very unstable on his feet. All of this has happened in a matter of a few months. His sister Makayla, who is only 10 years old, has seen everything her little brother is going through, seeing him get scared and knowing he is not yet old enough to understand why this is happening to him. It is hard to see the pain and suffering we as a family are feeling, while awaiting test results and on top of that, whether or not Makayla herself is a carrier.
My main focus is now solely on helping Jayden fight for his life, while comforting him. I have left my job to devote my time to take care of Jayden, waking up throughout the night to make sure Jayden gets his feedings, changing diapers, making sure he doesn't get hurt, hold him when he is frightened and to always remind him that he is loved.
At this time, there are no known cure or treatment. In the coming months, Mike and I will need a tremendous amount of support. There are day-to-day needs, medical equipments and medications not covered by OHIP, household needs, time off from work and new memories to create. There is no way to know the length of time our little boy will have left to be with his family, what challenges lies ahead and what expenses will accumulate.
Our goal is to provide us with resources to help keep Jayden as comfortable as possible and to help us enjoy and treasure our remaining time together, creating memories that we can hold onto in our hearts forever, without having the additional stress of worrying. Your donation will bless us along the way, helping with all the necessities and expenses, allowing us to focus on the time we have with each other. Thank you all for your continued support, following Jayden's Journey and for keeping our family in your thoughts. We really appreciate it beyond words.
Jayden Journey on Instagram @miracleforjayden
Jayden is 6 years old and has been diagnosed in January 2020 with a rare genetic disorder called Adreno-leukodystrophy (ALD). It is a disorder characterized by normal development in early childhood, followed by rapid degeneration as the disease ravages the brain leading to blindness, deafness, seizures, and a loss of muscle control. This relentless downward spiral leads to a vegetative state and eventually death, usually occuring 2 to 5 years once diagnosed. Currently, Jayden has lost his hearing and is having trouble swallowing, requiring a suction machine to remove excess saliva, in order to prevent it from entering his lungs. In March 2020, Jayden needed to get a gastronomy tube (G-tube) inserted in his stomach for nutrition and hydration.
Jayden has also started to get seizures and his mobility has been affected to the point where he is very unstable on his feet. All of this has happened in a matter of a few months. His sister Makayla, who is only 10 years old, has seen everything her little brother is going through, seeing him get scared and knowing he is not yet old enough to understand why this is happening to him. It is hard to see the pain and suffering we as a family are feeling, while awaiting test results and on top of that, whether or not Makayla herself is a carrier.
My main focus is now solely on helping Jayden fight for his life, while comforting him. I have left my job to devote my time to take care of Jayden, waking up throughout the night to make sure Jayden gets his feedings, changing diapers, making sure he doesn't get hurt, hold him when he is frightened and to always remind him that he is loved.
At this time, there are no known cure or treatment. In the coming months, Mike and I will need a tremendous amount of support. There are day-to-day needs, medical equipments and medications not covered by OHIP, household needs, time off from work and new memories to create. There is no way to know the length of time our little boy will have left to be with his family, what challenges lies ahead and what expenses will accumulate.
Our goal is to provide us with resources to help keep Jayden as comfortable as possible and to help us enjoy and treasure our remaining time together, creating memories that we can hold onto in our hearts forever, without having the additional stress of worrying. Your donation will bless us along the way, helping with all the necessities and expenses, allowing us to focus on the time we have with each other. Thank you all for your continued support, following Jayden's Journey and for keeping our family in your thoughts. We really appreciate it beyond words.
Jayden Journey on Instagram @miracleforjayden
Co-organizers (2)
Josie De Sousa
Organizer
Brampton, ON
Michael Sousa
Co-organizer