Immune Suppressed & Educationally Free
Donation protected
There is no easy way for me to start this. I am struggling with pride and ego, but my desire to do what is right and protect my child overrides those powerful feelings. We need help.
tl;dr: My son is a transplant recipient on immune-suppression medications to prevent him from rejecting his liver, small bowel and pancreas and I would like to send him to an outdoor school where the small class size and outdoor location will be safe for him. Any additional money will go toward sponsoring another medically fragile student to attend the outdoor program too.
Fourteen years ago, I went into pre-term labor expecting to have a son who would require immediate surgery upon birth. Instead, I found myself looking at a beautiful human just shy of five pounds with an intact abdomen. I recognize this is an odd celebration, but at my five month ultrasound, I learned that he had gastroschisis and would be born with his intestines outside of his body. By the grace of a higher power, he had been born looking small and “normal.”
Three days later our celebration of this miracle took a tragic turn. Through an unforeseen twist of events, Tyler became dependent on a transplant to live. His medical history is longer than a collection of encyclopedias and includes: a 6 month NICU/PICU stay before ever seeing sunlight, living off of IV nutrition and tube feeds, residence at Strong Hospital in Rochester, NY, Children’s Hospital of Pittsburgh, and the University of Nebraska Medical Center in Omaha, over 65 surgeries and procedures, and a ton of family support, strength, and resilience.
With corona-virus in the community, Tyler is not only a vulnerable population due to the medications that suppress his immune system and prevent rejection of his transplanted liver, small intestine, and pancreas, but also hard to treat. All of the things that kept him alive while he awaited organs left him with scarred veins and other complicated medical needs such as missing a spleen. If he were to contract Covid-19, he would be very difficult to take care of and keep alive. To make it more complicated, the vaccine will be a live vaccine, and even when it is available, he will not be able to receive it but will have to depend on the people in the community to get it to protect him. This will not be in the near future.
At the same time, Tyler has lived a beautiful, “normal” life and I hate to see him lose that. While I can’t send him to public school, I also can’t stand to make him stay home alone. I have to work to support the two of us, and won’t be able to be there for him in the way he needs to navigate the multi-dimensional impact isolation has already had, and will continue to have.
Enter micro-schooling.
The Walden Project will allow him to meet in a small group so that he can have social connection in a safe, supportive, and aware environment. It will also expand his awareness of his community, self and the natural world.
I will pay as much of the tuition as possible, but I am asking for the full price so that any additional money can be paid forward to another family in our situation. Tyler and I both feel strongly that we need to be there to support other people struggling with these difficult decisions and we thank you from the bottom of our hearts. Even a small donation helps, and if you aren't able to give money, sharing this fundraiser is just as appreciated.
tl;dr: My son is a transplant recipient on immune-suppression medications to prevent him from rejecting his liver, small bowel and pancreas and I would like to send him to an outdoor school where the small class size and outdoor location will be safe for him. Any additional money will go toward sponsoring another medically fragile student to attend the outdoor program too.
Fourteen years ago, I went into pre-term labor expecting to have a son who would require immediate surgery upon birth. Instead, I found myself looking at a beautiful human just shy of five pounds with an intact abdomen. I recognize this is an odd celebration, but at my five month ultrasound, I learned that he had gastroschisis and would be born with his intestines outside of his body. By the grace of a higher power, he had been born looking small and “normal.”
Three days later our celebration of this miracle took a tragic turn. Through an unforeseen twist of events, Tyler became dependent on a transplant to live. His medical history is longer than a collection of encyclopedias and includes: a 6 month NICU/PICU stay before ever seeing sunlight, living off of IV nutrition and tube feeds, residence at Strong Hospital in Rochester, NY, Children’s Hospital of Pittsburgh, and the University of Nebraska Medical Center in Omaha, over 65 surgeries and procedures, and a ton of family support, strength, and resilience.
With corona-virus in the community, Tyler is not only a vulnerable population due to the medications that suppress his immune system and prevent rejection of his transplanted liver, small intestine, and pancreas, but also hard to treat. All of the things that kept him alive while he awaited organs left him with scarred veins and other complicated medical needs such as missing a spleen. If he were to contract Covid-19, he would be very difficult to take care of and keep alive. To make it more complicated, the vaccine will be a live vaccine, and even when it is available, he will not be able to receive it but will have to depend on the people in the community to get it to protect him. This will not be in the near future.
At the same time, Tyler has lived a beautiful, “normal” life and I hate to see him lose that. While I can’t send him to public school, I also can’t stand to make him stay home alone. I have to work to support the two of us, and won’t be able to be there for him in the way he needs to navigate the multi-dimensional impact isolation has already had, and will continue to have.
Enter micro-schooling.
The Walden Project will allow him to meet in a small group so that he can have social connection in a safe, supportive, and aware environment. It will also expand his awareness of his community, self and the natural world.
I will pay as much of the tuition as possible, but I am asking for the full price so that any additional money can be paid forward to another family in our situation. Tyler and I both feel strongly that we need to be there to support other people struggling with these difficult decisions and we thank you from the bottom of our hearts. Even a small donation helps, and if you aren't able to give money, sharing this fundraiser is just as appreciated.
Organizer
Lisa Steiner
Organizer
Bath, NY