Kiley Sweet Benefit "DYB"
Spende geschützt
Welcome everyone! Thank you so much for attending this online event to support me in my recovery from the spinal cord injury that I suffered two years ago.
These past two years have not been easy. On August 26, 2018 four of my friends and I were on an ATV. When we crashed, I was thrown out of the vehicle and the next thing I knew I was flat on my back in the grass, and could not move. I wasn't in any pain and felt relatively calm, and was conscious for most of the time until I got in the ambulance.
I was in the Baystate pediatric ICU for a few weeks, where I had two major surgeries on my neck. The doctors determined that I had sustained an incomplete C5/C6 spinal cord injury, meaning that I was paralyzed from the upper-chest down. I didn't even know what a spinal cord injury was before this...
I was flown in a helicopter over to Mass General where I stayed for a few more weeks in their ICU and had a tracheostomy placed in my neck, so I no longer had to have a bunch of tubes in my nose and mouth. At this point I was in pretty rough shape; I could not breathe, eat, drink, or move anything except my right arm.
Next I moved to Spaulding, which is a rehabilitation hospital. I stayed on the spinal cord injury floor for four months where I had full days of therapy five days a week. During this time I learned to breathe on my own again, eat and drink regular food/beverages, and regained some strength in my neck, shoulders, and arms.
When I got home about 18 months ago, the adjustment was really difficult and physically I was a mess. I slowly started to do some physical and occupational therapy as well as school work a couple times a week with the teachers who came to my house so I could graduate from high school on time. With the help of a lot of people, I was able to go to my prom and graduate on time.
While most of my friends went off to college last fall, I decided it would be best to take a gap year to solely focus on my recovery. Within this year I have made so much progress and am now able to move and do more things on my own that once seemed completely impossible. I have to give most of the credit to Journey Forward, a specialized gym for people with paralysis in Canton, MA. I wish I could show each of you all of the little victories I have won this past year.
This fall I was supposed to move into a dorm at the University of Connecticut, but because of the pandemic I have to start my first semester of college at home. Hopefully I can go in the spring because this has been such a huge goal for me and means so much for my independence. I'm looking forward to finally feeling like a “normal” teenager!
While I am slowly starting to get back to a normal life, this injury will most likely be a part of me for the rest of my life. That's why four of my dad's oldest friends, (Eric, Drew, Mark, and Mike) have decided to form a trust that they described as follows:
“With the family’s support, we have formed a trust named KILEY N. SWEET IRREVOCABLE SUPPLEMENTAL NEEDS TRUST. The four of us are the initial trustees of the trust. The sole beneficiary of the trust is Kiley. The sole purpose of the trust is to help Kiley in her recovery from spinal cord injury and support her in overcoming obstacles related to her injuries. In our capacity as trustees, we will have discretion to decide when to make distributions to or for the benefit of Kiley. At the Sweet family’s request, the family will not control the trust funds or otherwise play a formal role in the administration of the trust. The money we raise will be for Kiley and not for the family’s general expenses. If we are fortunate enough to reach a point where Kiley is fully recovered from her injuries and there are remaining trust funds, the remaining funds will be donated to an organization involved in research or support to benefit people with spinal cord injuries.
In short, it is our “business plan” to launch an organization with a little bit of structure that will support Kiley now and in the future. We think that we can make a meaningful difference by providing financial resources and, as important, giving Kiley confidence that she has a support network in addition to her immediate family that will outlast the challenging days she still faces on a regular basis. We know that her path is not likely to be easy or a straight line and we intend to be accepting and supportive of her decisions regarding strategies for recovery and priorities for equipment, treatments, etc.”
It has been said to me that this on-line event is just the start. Thank you so much to all the people in my life who have really stepped up these past two years. The amount of love and support that I have received is extremely powerful and fuels my determination. Please know that even the smallest acts of kindness are not unnoticed and they are important. You are all a part of my journey and I am so grateful.
My family’s motto is “DYB”. This stands for “Do Your Best”. We say it to each other every day and believe it is a powerful message for all of us. It takes strength and resilience to “DYB” and you all help me so much. Seriously, I cannot thank you enough.
-Kiley
These past two years have not been easy. On August 26, 2018 four of my friends and I were on an ATV. When we crashed, I was thrown out of the vehicle and the next thing I knew I was flat on my back in the grass, and could not move. I wasn't in any pain and felt relatively calm, and was conscious for most of the time until I got in the ambulance.
I was in the Baystate pediatric ICU for a few weeks, where I had two major surgeries on my neck. The doctors determined that I had sustained an incomplete C5/C6 spinal cord injury, meaning that I was paralyzed from the upper-chest down. I didn't even know what a spinal cord injury was before this...
I was flown in a helicopter over to Mass General where I stayed for a few more weeks in their ICU and had a tracheostomy placed in my neck, so I no longer had to have a bunch of tubes in my nose and mouth. At this point I was in pretty rough shape; I could not breathe, eat, drink, or move anything except my right arm.
Next I moved to Spaulding, which is a rehabilitation hospital. I stayed on the spinal cord injury floor for four months where I had full days of therapy five days a week. During this time I learned to breathe on my own again, eat and drink regular food/beverages, and regained some strength in my neck, shoulders, and arms.
When I got home about 18 months ago, the adjustment was really difficult and physically I was a mess. I slowly started to do some physical and occupational therapy as well as school work a couple times a week with the teachers who came to my house so I could graduate from high school on time. With the help of a lot of people, I was able to go to my prom and graduate on time.
While most of my friends went off to college last fall, I decided it would be best to take a gap year to solely focus on my recovery. Within this year I have made so much progress and am now able to move and do more things on my own that once seemed completely impossible. I have to give most of the credit to Journey Forward, a specialized gym for people with paralysis in Canton, MA. I wish I could show each of you all of the little victories I have won this past year.
This fall I was supposed to move into a dorm at the University of Connecticut, but because of the pandemic I have to start my first semester of college at home. Hopefully I can go in the spring because this has been such a huge goal for me and means so much for my independence. I'm looking forward to finally feeling like a “normal” teenager!
While I am slowly starting to get back to a normal life, this injury will most likely be a part of me for the rest of my life. That's why four of my dad's oldest friends, (Eric, Drew, Mark, and Mike) have decided to form a trust that they described as follows:
“With the family’s support, we have formed a trust named KILEY N. SWEET IRREVOCABLE SUPPLEMENTAL NEEDS TRUST. The four of us are the initial trustees of the trust. The sole beneficiary of the trust is Kiley. The sole purpose of the trust is to help Kiley in her recovery from spinal cord injury and support her in overcoming obstacles related to her injuries. In our capacity as trustees, we will have discretion to decide when to make distributions to or for the benefit of Kiley. At the Sweet family’s request, the family will not control the trust funds or otherwise play a formal role in the administration of the trust. The money we raise will be for Kiley and not for the family’s general expenses. If we are fortunate enough to reach a point where Kiley is fully recovered from her injuries and there are remaining trust funds, the remaining funds will be donated to an organization involved in research or support to benefit people with spinal cord injuries.
In short, it is our “business plan” to launch an organization with a little bit of structure that will support Kiley now and in the future. We think that we can make a meaningful difference by providing financial resources and, as important, giving Kiley confidence that she has a support network in addition to her immediate family that will outlast the challenging days she still faces on a regular basis. We know that her path is not likely to be easy or a straight line and we intend to be accepting and supportive of her decisions regarding strategies for recovery and priorities for equipment, treatments, etc.”
It has been said to me that this on-line event is just the start. Thank you so much to all the people in my life who have really stepped up these past two years. The amount of love and support that I have received is extremely powerful and fuels my determination. Please know that even the smallest acts of kindness are not unnoticed and they are important. You are all a part of my journey and I am so grateful.
My family’s motto is “DYB”. This stands for “Do Your Best”. We say it to each other every day and believe it is a powerful message for all of us. It takes strength and resilience to “DYB” and you all help me so much. Seriously, I cannot thank you enough.
-Kiley
Organisator
Eric Stone
Organisator
Monroe, CT