Josey's Trip to Disney
Donation protected
Josey is a smart, beautiful, funny, and exceptionally kind 15-year-old girl from small-town New Hampshire. Those who know her are often in awe of how hard she works, and how well she is able to work through any situation that comes her way. She is truly a joy to know and spend time with, and the picture of what any parent could ask for as far as a responsible, conscientious daughter.
This hasn't been an easy road for Josey. She works hard because she has to. She experiences a rare, congenital disorder called Septo-Optic Dysplasia. This is a malformation of the mid-line of her brain that affects her optic nerves, pituitary gland, and other parts of her brain. Because of these differences, she is completely blind, and takes a lot of medication every day to keep her body healthy and going. These medications manage her pituitary condition and seizures, and without them, she would be in a lot of trouble.
Josey also has an anxiety disorder she has been working hard in therapy to manage. She has come such a long way over the past few years in building confidence in herself, and a sense of growing independence.
Because of her complex medical and mental health issues, Josey has not been ready to spend time away from her family for any length of time. She has always had a medically trained adult with her, for fear she may need emergency medications, including painful injections, at any time. Josey has never been on a sleep over, or to summer camp. The only time she has ever been away from home overnight without her parents was during a hospitalization. She doesn't even take the school bus because to set this up would be so complicated, it is just easier for a parent to pick her up. She is quite sensitive to these issues of how to coordinate her care, and often will factor this into any decisions she makes around doing typical teenage things, and until recently, would decide against them based on the complexity of her medical needs.
Financially, this journey has been extremely difficult for our family. Because one parent always needs to be available for multiple specialist appointments, medical emergencies, illness, and coordination of her services and educational needs, only one of us can work. With a family of 6, this makes things extremely tight for us. Even meeting basic needs like food, clothing, and shelter for our 4 amazing daughters is a great challenge every month, and we are in mountains of debt. We will likely never own our own house, we will definitely never be able to take a family vacation, and we often approach the holidays with a feeling of dread.
This year, a tremendous opportunity has been presented for Josey. Her school chorus is going on a trip to Disney! What's more, and to us, most important, is Josey is finally ready to take the step to go on this trip with her classmates! All of her medical and support needs can be set up, and she has the opportunity to go have this amazing experience with other teenagers, and finally, without her parents! This is monumental for her. It's not about the Disney experience, but more about the chance to do a typical teenage thing with her classmates, to celebrate the independence and confidence she has built by reaching out beyond her boundaries and being... 15.
We would love for her to be able to reach this milestone, but can't do it alone. The trip costs $1400.00, which is such a large sum of money for our family to manage, we can't possibly imagine how we could do it- especially since the money is due over the course of the holiday season. Without the kindness of others who know her story, and believe as much as we do she is not only ready but well-deserving of this long-overdue experience, we will not be able to make it happen.
Please consider donating to Josey's Disney Trip fund, to help Josey take this next step. The goal is $1600.00, which will cover the cost of the trip as well as some spending money for her while in Disney, to buy food (the trip cost only covers 2 meals a day) and incidentals. Any donation you can make will be greatly appreciated, and mean the world to our family and to Josey. We understand this is a difficult time of year for many to donate, so if you are not able, please consider sharing this page to others who may be interested in helping us reach this goal.
Many thanks-
The Pelillo Family
This hasn't been an easy road for Josey. She works hard because she has to. She experiences a rare, congenital disorder called Septo-Optic Dysplasia. This is a malformation of the mid-line of her brain that affects her optic nerves, pituitary gland, and other parts of her brain. Because of these differences, she is completely blind, and takes a lot of medication every day to keep her body healthy and going. These medications manage her pituitary condition and seizures, and without them, she would be in a lot of trouble.
Josey also has an anxiety disorder she has been working hard in therapy to manage. She has come such a long way over the past few years in building confidence in herself, and a sense of growing independence.
Because of her complex medical and mental health issues, Josey has not been ready to spend time away from her family for any length of time. She has always had a medically trained adult with her, for fear she may need emergency medications, including painful injections, at any time. Josey has never been on a sleep over, or to summer camp. The only time she has ever been away from home overnight without her parents was during a hospitalization. She doesn't even take the school bus because to set this up would be so complicated, it is just easier for a parent to pick her up. She is quite sensitive to these issues of how to coordinate her care, and often will factor this into any decisions she makes around doing typical teenage things, and until recently, would decide against them based on the complexity of her medical needs.
Financially, this journey has been extremely difficult for our family. Because one parent always needs to be available for multiple specialist appointments, medical emergencies, illness, and coordination of her services and educational needs, only one of us can work. With a family of 6, this makes things extremely tight for us. Even meeting basic needs like food, clothing, and shelter for our 4 amazing daughters is a great challenge every month, and we are in mountains of debt. We will likely never own our own house, we will definitely never be able to take a family vacation, and we often approach the holidays with a feeling of dread.
This year, a tremendous opportunity has been presented for Josey. Her school chorus is going on a trip to Disney! What's more, and to us, most important, is Josey is finally ready to take the step to go on this trip with her classmates! All of her medical and support needs can be set up, and she has the opportunity to go have this amazing experience with other teenagers, and finally, without her parents! This is monumental for her. It's not about the Disney experience, but more about the chance to do a typical teenage thing with her classmates, to celebrate the independence and confidence she has built by reaching out beyond her boundaries and being... 15.
We would love for her to be able to reach this milestone, but can't do it alone. The trip costs $1400.00, which is such a large sum of money for our family to manage, we can't possibly imagine how we could do it- especially since the money is due over the course of the holiday season. Without the kindness of others who know her story, and believe as much as we do she is not only ready but well-deserving of this long-overdue experience, we will not be able to make it happen.
Please consider donating to Josey's Disney Trip fund, to help Josey take this next step. The goal is $1600.00, which will cover the cost of the trip as well as some spending money for her while in Disney, to buy food (the trip cost only covers 2 meals a day) and incidentals. Any donation you can make will be greatly appreciated, and mean the world to our family and to Josey. We understand this is a difficult time of year for many to donate, so if you are not able, please consider sharing this page to others who may be interested in helping us reach this goal.
Many thanks-
The Pelillo Family
Organizer
Angel Pelillo
Organizer
Concord, NH