Our Mito warrior has put down his battle sword
Donation protected
I don’t even know how to do this. We have never asked for help financially or ask for help from a charity throughout Aiden his entire disease progression. Adam would probably kill me, knowing that I’m even trying to do this. But honestly, I don’t know what else to do to give the family one less struggle.
Aiden has been battling his mito condition for so many years. He had a love of two things in the hospital which made it a “little worth it” to go to the hospital: chocolate cake and blonde nurses. No one resisted the long eyelashes and biggest grins. He fought strong and his parents were the best advocates he could ever have. I credit Melissa and Adam into why Aiden has survived as long as he has when he was given the life expectancy of 10. They figured out ways to get him to specialists in Georgia, Ohio, and Pennsylvania. Countless experimental trials were looked into. If love could have saved him, he would live forever. But love isn’t enough to keep him with us forever. Thankfully, we were able to get the priest in to baptize him before. That was important to the family.
Over the last couple years, his mobility has substantially declined. This past year he has been wheelchair dependent and requires pretty much 100% total assist. He was a feeding tube because when he would eat, he would get aspiration pneumonia. Tell a child that they can’t eat with their siblings? As small as this is, the thing that broke my heart. Then came another decline… when he could no longer play Fortnite with his brothers. he loved to play with the boys and Owen and Cameron would always find a way to make sure he stayed until the end. It also helps when you play a round where you respawn constantly. His hands just didn’t work any longer to even keep the control in his hands. Let alone use his fingers on the buttons. Soon Aiden, there will be no bedtimes, you will have the most amount of elimination‘s with the best loot ever and can’t eat your sour junk candy all you want without getting a bellyache.
The inability to be down there at every hospitalization has been gut wrenching. The negative things people have to say about us as parents are heard. “We will never have done enough.“ can anyone really ever do enough? All we can do is the best we can with what we have. I promise you, I looked for a handbook on how to coparent and be the step mom of a terminally ill child. There isn’t one. I just NEED my husband to know that he’s done everything he could and Aiden always knew his family loved him. While he was not able to be there physically because of having to keep a job to support his family, and the insurance that we so desperately need. Nothing comes without a cost. Adam has been every day for the last year trying to prepare for this, financially and emotionally. I don’t know that the latter is one you can actually do.
Adam did everything he could to get life insurance. Aiden was diagnosed so severely so quickly that how many life insurance companies do you think wanted to talk to the parents of a dying child? We try to save up because we know the time is in evitable. But then we also know that in the last week and a half, We have driven back-and-forth to Lansing a couple times and have several more trips that we will be making in these next couple days and week. Just to get to Lansing is almost $80 each way. Being with Aiden is priceless and I am thankful for as many hospitalizations as I have been “lucky enough“ to be part of. Adam and I will tell you that every time. But not being able to put food on the table of our four other kids and keep a roof over the head of them is something we have battled with for years. Where are you the most needed? That was always our question.
Again, Adam would kill me if he knew I was writing this. We have had such an amazing village that has supported us throughout this long and cruel, progressive journey. But at the end of the day, we still have expenses. We still must deal with. No parents should have to worry about being at work or being with their child while they are passing and the days after. Every day the Adam will be off this week will be unpaid. Every day I am here supporting my husband, I am here unpaid. I don’t even know how much it cost to have a funeral. Adam and I will be having a small one in Alpena as a small service for our up north family.
And usual, Ashley fashion, I have rambled extensively. Thank you if you even made it to this far off reading. I feel like I should give you money lol. Adam just needs to know how loved he is and how much love Aiden has brought to the world. no parent should be going through this.
After an amazing village that is supported us and followed Aidens story throughout this long and cruel progressive journey, the funds raised will go in part to funeral expenses for Aiden as well as expenses incurred to make sure that we are able to fully focus on Aiden and our family right now during this unimaginably difficult time... prayers are welcome as this is unchartered territory for us and frankly, we are just scared. No one should have to bury their child. And unfortunately, I know several of you have. This just isn’t fair.
Aiden has been battling his mito condition for so many years. He had a love of two things in the hospital which made it a “little worth it” to go to the hospital: chocolate cake and blonde nurses. No one resisted the long eyelashes and biggest grins. He fought strong and his parents were the best advocates he could ever have. I credit Melissa and Adam into why Aiden has survived as long as he has when he was given the life expectancy of 10. They figured out ways to get him to specialists in Georgia, Ohio, and Pennsylvania. Countless experimental trials were looked into. If love could have saved him, he would live forever. But love isn’t enough to keep him with us forever. Thankfully, we were able to get the priest in to baptize him before. That was important to the family.
Over the last couple years, his mobility has substantially declined. This past year he has been wheelchair dependent and requires pretty much 100% total assist. He was a feeding tube because when he would eat, he would get aspiration pneumonia. Tell a child that they can’t eat with their siblings? As small as this is, the thing that broke my heart. Then came another decline… when he could no longer play Fortnite with his brothers. he loved to play with the boys and Owen and Cameron would always find a way to make sure he stayed until the end. It also helps when you play a round where you respawn constantly. His hands just didn’t work any longer to even keep the control in his hands. Let alone use his fingers on the buttons. Soon Aiden, there will be no bedtimes, you will have the most amount of elimination‘s with the best loot ever and can’t eat your sour junk candy all you want without getting a bellyache.
The inability to be down there at every hospitalization has been gut wrenching. The negative things people have to say about us as parents are heard. “We will never have done enough.“ can anyone really ever do enough? All we can do is the best we can with what we have. I promise you, I looked for a handbook on how to coparent and be the step mom of a terminally ill child. There isn’t one. I just NEED my husband to know that he’s done everything he could and Aiden always knew his family loved him. While he was not able to be there physically because of having to keep a job to support his family, and the insurance that we so desperately need. Nothing comes without a cost. Adam has been every day for the last year trying to prepare for this, financially and emotionally. I don’t know that the latter is one you can actually do.
Adam did everything he could to get life insurance. Aiden was diagnosed so severely so quickly that how many life insurance companies do you think wanted to talk to the parents of a dying child? We try to save up because we know the time is in evitable. But then we also know that in the last week and a half, We have driven back-and-forth to Lansing a couple times and have several more trips that we will be making in these next couple days and week. Just to get to Lansing is almost $80 each way. Being with Aiden is priceless and I am thankful for as many hospitalizations as I have been “lucky enough“ to be part of. Adam and I will tell you that every time. But not being able to put food on the table of our four other kids and keep a roof over the head of them is something we have battled with for years. Where are you the most needed? That was always our question.
Again, Adam would kill me if he knew I was writing this. We have had such an amazing village that has supported us throughout this long and cruel, progressive journey. But at the end of the day, we still have expenses. We still must deal with. No parents should have to worry about being at work or being with their child while they are passing and the days after. Every day the Adam will be off this week will be unpaid. Every day I am here supporting my husband, I am here unpaid. I don’t even know how much it cost to have a funeral. Adam and I will be having a small one in Alpena as a small service for our up north family.
And usual, Ashley fashion, I have rambled extensively. Thank you if you even made it to this far off reading. I feel like I should give you money lol. Adam just needs to know how loved he is and how much love Aiden has brought to the world. no parent should be going through this.
After an amazing village that is supported us and followed Aidens story throughout this long and cruel progressive journey, the funds raised will go in part to funeral expenses for Aiden as well as expenses incurred to make sure that we are able to fully focus on Aiden and our family right now during this unimaginably difficult time... prayers are welcome as this is unchartered territory for us and frankly, we are just scared. No one should have to bury their child. And unfortunately, I know several of you have. This just isn’t fair.
Co-organizers (2)
Ashley Page
Organizer
Alpena, MI
ADAM PAGE
Co-organizer