Help Kinsley Thrive
Donation protected
If you have ever met Kinsley you know right away that there is more to her than meets the eye. She is a 9 year old who has been diagnosed with epilepsy, narcolepsy type 1 with cataplexy, and failure to thrive. However this has not crushed her spunky spirit. Even on the worst days can be found humming a song.
Kinsley began to decline in 2019 and in March of 2021 was admitted having lost 12% of her weight in a matter of months. She was in refeeding syndrome and required a gtube to be placed. Since then we have struggled to maintain weights as she has had an even worse decline in oral intake and could not tolerate the g feeds. Having dropped back of the growth scale it was decided to change her feeds to a jejunum feed and she was switched to a GJ.
Kinsley is connected to a continuous feed no less than 14 hours at a time. She can only tolerate 72mls an hour. She is also dealing with the side effects of nearly 10 medications that she needs to be on.
We don’t know why she is in this decline. Although she has the above mentioned neurological disorders it doesn’t explain truly what the missing piece is. She has grand mal seizures and sleep attacks that can happen even with medication.
Even with near constant testing we haven’t been able to get clear answers and she has been described by her care team of physicians in nearly every department as a mystery.
We have started the process of more genetic testing and we are hopeful that new eyes and and pediatric neurology / pulmonary teams at Cincinnati Children’s Hospital will bring new ideas and answers.
We are working not to just fundraise to off set the enormous medical expenses but to get her story out and maybe find resources or access to research or trials for anything that may give her a better quality of life.
The round the clock care is exhausting but it’s even more tiring to watch she struggle and feel the way she does more often than not.
The expense of travel, hospital stays, medical equipment, nursing, and lost wages has taken a huge toll on us over the last year. We have been so thankful for the community we live within. I know for certain we would not make it without it. From shoulders to cry on and ears to vent to. Meals, sitting with her so I can get a break, taking Kay out to get much needed time away too means so so much to our family.
I made a promise to not give up trying to make this better for her.
If you know of any research surrounding these disorders or have ideas on how to help us find ways to share her story and gain some traction please reach out via the contacts on the below website.
HelpKinsleyThrive for updates
Join Team Kinsley on Facebook
@calli-bieler to venmo
https://www.amazon.com/hz/wishlist/ls/1KKJK6BYQKV9V
Kinsley began to decline in 2019 and in March of 2021 was admitted having lost 12% of her weight in a matter of months. She was in refeeding syndrome and required a gtube to be placed. Since then we have struggled to maintain weights as she has had an even worse decline in oral intake and could not tolerate the g feeds. Having dropped back of the growth scale it was decided to change her feeds to a jejunum feed and she was switched to a GJ.
Kinsley is connected to a continuous feed no less than 14 hours at a time. She can only tolerate 72mls an hour. She is also dealing with the side effects of nearly 10 medications that she needs to be on.
We don’t know why she is in this decline. Although she has the above mentioned neurological disorders it doesn’t explain truly what the missing piece is. She has grand mal seizures and sleep attacks that can happen even with medication.
Even with near constant testing we haven’t been able to get clear answers and she has been described by her care team of physicians in nearly every department as a mystery.
We have started the process of more genetic testing and we are hopeful that new eyes and and pediatric neurology / pulmonary teams at Cincinnati Children’s Hospital will bring new ideas and answers.
We are working not to just fundraise to off set the enormous medical expenses but to get her story out and maybe find resources or access to research or trials for anything that may give her a better quality of life.
The round the clock care is exhausting but it’s even more tiring to watch she struggle and feel the way she does more often than not.
The expense of travel, hospital stays, medical equipment, nursing, and lost wages has taken a huge toll on us over the last year. We have been so thankful for the community we live within. I know for certain we would not make it without it. From shoulders to cry on and ears to vent to. Meals, sitting with her so I can get a break, taking Kay out to get much needed time away too means so so much to our family.
I made a promise to not give up trying to make this better for her.
If you know of any research surrounding these disorders or have ideas on how to help us find ways to share her story and gain some traction please reach out via the contacts on the below website.
HelpKinsleyThrive for updates
Join Team Kinsley on Facebook
@calli-bieler to venmo
https://www.amazon.com/hz/wishlist/ls/1KKJK6BYQKV9V
Fundraising team: Team fundraiser (2)
Calli Bieler
Organizer
North Charleston, SC
Tom Steenhuysen
Team member