Donation protected
The last thing any parent wants to face is losing their child and feeling powerless to stop it. Yet that is the reality that I face today, and have faced every day since my thirteen-year-old Ian was first admitted to the hospital on October 2, 2021.
Some of you may know Ian as Izzybella, and some of you may also know that Izzybella recently confided that they feel more comfortable going by the name Ian and the pronouns they/them. In this we support them.
Though they changed their name, they maintained their love for the outdoors; running on the track team, hiking, fishing, and horseback riding. They were very independent and creative, and had many ambitions. It is heartbreaking to have to refer to those things in the past tense.
Back in October, within the short span of a single week, Ian’s health rapidly declined and resulted in a trip to the ER. From there things have continued to spiral downward. Ian was inpatient at Primary Children’s Hospital and other institutions for the following 9 weeks. Ian has undergone many tests and exams and through all of that there are still no answers, no solutions. It’s like a switch was flipped somewhere in Ian’s mind and no one can get through. After a long two months of more questions than answers, Ian was finally discharged and sent home to live out whatever life could be hoped for in their nearly catatonic state. Those weeks alone have resulted in over $50,000 of out-of-pocket expenses.
Ian does not eat, they are literally being nourished through a feeding tube, which causes complications of it’s own. They have limited ability to speak. Their motor controls are severely limited, and they require transportation by wheelchair, walker, or being carried. They often have unexplained seizures for hours. They’re no longer able to participate in school. Ian is officially disabled at this point and requires 24/7 care.
We miss Ian. We miss Ian’s smile and the light in their eyes. We have not given up hope. We believe that Ian is still in there, that their love for life can resurface and that they can have a future full of adventures, love, and opportunity. But we cannot do this alone. We need help. Ian needs help.
Ian has numerous doctor appointments and hospital visits every week and we need help raising financial support for medical appointments and cost of care. We have tried desperately to find a care center that can help Ian recover and have met nothing but denial. Reasons for denial range from “no available room” to “we cannot support someone that requires that level of physical care”. We have been denied by over 50 facilities at this point because of the state of medical care availability right now. I feel like I have exhausted my resources and don’t know where else I can look. Once we find specialists who can help, I will give more detailed updates on the programs and our needs.
On top of struggling to find places even willing to admit Ian, the options that may (hopefully) become available are not covered by insurance and have quoted daunting costs. One hospital quoted the cost could be near $200,000. The cost of ongoing visits to doctors since Ian was discharged are piling up, and there seems to be no end in sight as Ian’s condition is not improving. In addition, our home is in a very remote town, and driving to and from distant hospitals is taxing. Often times we have to stay overnight in rentals during those visits.
Caring for Ian requires my constant presence and attention. Currently, I’m doing this 7 days at a time by myself. I would want to hire additional help with caregiving tasks until we are able to get her into a facility. I will not sugar-coat the reality of this situation, the last few months have been extremely challenging. I don’t know where else to look to help my child and even if I could find the help, I cannot afford it. I face the daily fear that if Ian doesn’t get help and improve soon, this illness will take Ian away from me, away from all of those who love Ian.
As a mother, it pains me to admit that I cannot provide my child with everything that they need for a happy healthy life. It pains me to see Ian in this way, a shell of the bright young kid they used to be.
Please, if you can offer any help, whether it be information about potential care, sharing this information with others, or a few dollars to help alleviate the financial burden, I will be forever grateful, as I’m sure Ian will be once we get through this. With your help I can focus energy on helping Ian recover.
With Eternal Gratitude,
Alyssa (Ian’s Mother)
Some of you may know Ian as Izzybella, and some of you may also know that Izzybella recently confided that they feel more comfortable going by the name Ian and the pronouns they/them. In this we support them.
Though they changed their name, they maintained their love for the outdoors; running on the track team, hiking, fishing, and horseback riding. They were very independent and creative, and had many ambitions. It is heartbreaking to have to refer to those things in the past tense.
Back in October, within the short span of a single week, Ian’s health rapidly declined and resulted in a trip to the ER. From there things have continued to spiral downward. Ian was inpatient at Primary Children’s Hospital and other institutions for the following 9 weeks. Ian has undergone many tests and exams and through all of that there are still no answers, no solutions. It’s like a switch was flipped somewhere in Ian’s mind and no one can get through. After a long two months of more questions than answers, Ian was finally discharged and sent home to live out whatever life could be hoped for in their nearly catatonic state. Those weeks alone have resulted in over $50,000 of out-of-pocket expenses.
Ian does not eat, they are literally being nourished through a feeding tube, which causes complications of it’s own. They have limited ability to speak. Their motor controls are severely limited, and they require transportation by wheelchair, walker, or being carried. They often have unexplained seizures for hours. They’re no longer able to participate in school. Ian is officially disabled at this point and requires 24/7 care.
We miss Ian. We miss Ian’s smile and the light in their eyes. We have not given up hope. We believe that Ian is still in there, that their love for life can resurface and that they can have a future full of adventures, love, and opportunity. But we cannot do this alone. We need help. Ian needs help.
Ian has numerous doctor appointments and hospital visits every week and we need help raising financial support for medical appointments and cost of care. We have tried desperately to find a care center that can help Ian recover and have met nothing but denial. Reasons for denial range from “no available room” to “we cannot support someone that requires that level of physical care”. We have been denied by over 50 facilities at this point because of the state of medical care availability right now. I feel like I have exhausted my resources and don’t know where else I can look. Once we find specialists who can help, I will give more detailed updates on the programs and our needs.
On top of struggling to find places even willing to admit Ian, the options that may (hopefully) become available are not covered by insurance and have quoted daunting costs. One hospital quoted the cost could be near $200,000. The cost of ongoing visits to doctors since Ian was discharged are piling up, and there seems to be no end in sight as Ian’s condition is not improving. In addition, our home is in a very remote town, and driving to and from distant hospitals is taxing. Often times we have to stay overnight in rentals during those visits.
Caring for Ian requires my constant presence and attention. Currently, I’m doing this 7 days at a time by myself. I would want to hire additional help with caregiving tasks until we are able to get her into a facility. I will not sugar-coat the reality of this situation, the last few months have been extremely challenging. I don’t know where else to look to help my child and even if I could find the help, I cannot afford it. I face the daily fear that if Ian doesn’t get help and improve soon, this illness will take Ian away from me, away from all of those who love Ian.
As a mother, it pains me to admit that I cannot provide my child with everything that they need for a happy healthy life. It pains me to see Ian in this way, a shell of the bright young kid they used to be.
Please, if you can offer any help, whether it be information about potential care, sharing this information with others, or a few dollars to help alleviate the financial burden, I will be forever grateful, as I’m sure Ian will be once we get through this. With your help I can focus energy on helping Ian recover.
With Eternal Gratitude,
Alyssa (Ian’s Mother)
Organizer
Shannon Spence
Organizer
Salt Lake City, UT