- H
I am not so sure how to start this because I'd hoped for so long to avoid this path. It's long and wordy because this is hard for me and I think if you're giving your money you deserve to know where it's going.
My name is Aaron and I'm 33 years old. My wife Casie and I live in a small village in Michigan with our 3 children. There is Landon, age 13 who is from my first marriage. Casie is his step mother. Next, we have Ethan who is ALMOST 2 years old. Lastly and certainly not least, we have Findlay who is a nearing the 3 month mark in early January.
Landon is an extraordinary young man who has had a lot of stuff dealt his way in life and who has been struggling with anxiety and depression for a few years now. As he's entered these teen years he's really been struggling. Often, issues with his younger brother push his anxiety to extremes.
Ethan suffers from a rare disease known as Tuberous Sclerosis Complex (TSC) This disease impacts approximately 1 in 6000 (A Million people worldwide) I guess you could say he is 1 in a MILLION! That's no understatement! TSC causes a host of issues ranging from minor to severe. His disease causes tumors to grow on any and all of his vital organs. So if there is a specialist for it, he sees them regularly. He was also diagnosed with CKD Chronic Kidney Disease at age 1.
One of the major complications with TSC is the growths known as TUBERS in his brain. These tubers can cause seizures. Seizures he's been having since April, early Covid season. He's now on 4 daily medications to try and control the seizures. Even a chemotherapy medication. Still, the seizures persist. It's been determined that Ethan will need brain surgery in the near future. However, not before even more tests are conducted and data gathered. This is now involving a trip to a hospital out of state for about a week. And that's not even the surgery. We often travel over 90 miles one way for a majority of Ethans appointments with specialists. In the last year we have put over 30,000 miles on our car that is responsible for getting myself to work, Landon to school (when in person) family running and medical appointments for all 3 children. It now sits around 195,000 miles and is 15 years old. God love her, she still starts every time. However, time and travel are taking their toll.
3rdly, Findlay has medical needs as well. Findlay was born with bi lateral clubbed feet. He's been in medical casts weekly since 2 weeks old. He recently had surgery as well. His condition is fortuantely only a bigger issue the first few years.
I work at a job I love and have been there going on two years this next spring. I've been blessed and beyond fortunate that they have worked with me and my family with our ever changing moments. My hours have been cut and my wife stays home because the cost of child care for children who need knowledgeable monitoring.... Isn't cheap. Ethan has multiple seizures a week and sometimes multiple a day. A quick Google search on his different medications, equates to about $300K a year without ins. Thank God we have insurance!
Last month I had reached out to the Johnny Burke Children's Foundation. With Christmas fast approaching and the financial burden and upcoming financial stressors on the mind, I asked for help to provide some Christmas magic for my family. Well, Johnny came through with the help of a great person named Mitch at the USDA. The amazing people at the USDA provided us with Christmas gifts for the family. Johnny and his foundation came through with some funds as well to help us get caught up on a few priority bills and get some Christmas gifts for the kids. We are BEYOND Greatful to them ALL!
In my talks with Johnny, he thought maybe going a Gofundme route may help us more as our need is continuously ongoing, especially with Ethan. I was/am hesitant just because of prices sake. But he's right. Looking ahead, it's still nerve wracking. All the travels and worry. We are in severe need of moving our family of 5 ppl and 2 dogs out of our two bedroom apartment that we have outgrown on bad level.
I put a goal of 5K. I did that because I'd like to be able to revitalize our moving fund we had set aside that Covid ate. I am also hoping to upgrade to a better primary vehicle that fits our family and long distance traveling needs. I've been planning to do that during tax season. Realistically, that's going to probably be closer to when hes having surgery. I'm trying to avoid a major car payment that could hurt us. Money donated is going towards keeping the current car going as it needs some more front end work and going towards replacement in tax season. Also, lodging and travels for the extensive medical trips.
We also document Ethans situation on Facebook and you can follow that @
https://www.facebook.com/groups/385111088886375/?ref=sharehttps://www.facebook.com/groups/385111088886375/?ref=share
If you made it this far, Thank You.
If you'd like to learn more about TSC you can visit the TSALLIANCE.ORG
My name is Aaron and I'm 33 years old. My wife Casie and I live in a small village in Michigan with our 3 children. There is Landon, age 13 who is from my first marriage. Casie is his step mother. Next, we have Ethan who is ALMOST 2 years old. Lastly and certainly not least, we have Findlay who is a nearing the 3 month mark in early January.
Landon is an extraordinary young man who has had a lot of stuff dealt his way in life and who has been struggling with anxiety and depression for a few years now. As he's entered these teen years he's really been struggling. Often, issues with his younger brother push his anxiety to extremes.
Ethan suffers from a rare disease known as Tuberous Sclerosis Complex (TSC) This disease impacts approximately 1 in 6000 (A Million people worldwide) I guess you could say he is 1 in a MILLION! That's no understatement! TSC causes a host of issues ranging from minor to severe. His disease causes tumors to grow on any and all of his vital organs. So if there is a specialist for it, he sees them regularly. He was also diagnosed with CKD Chronic Kidney Disease at age 1.
One of the major complications with TSC is the growths known as TUBERS in his brain. These tubers can cause seizures. Seizures he's been having since April, early Covid season. He's now on 4 daily medications to try and control the seizures. Even a chemotherapy medication. Still, the seizures persist. It's been determined that Ethan will need brain surgery in the near future. However, not before even more tests are conducted and data gathered. This is now involving a trip to a hospital out of state for about a week. And that's not even the surgery. We often travel over 90 miles one way for a majority of Ethans appointments with specialists. In the last year we have put over 30,000 miles on our car that is responsible for getting myself to work, Landon to school (when in person) family running and medical appointments for all 3 children. It now sits around 195,000 miles and is 15 years old. God love her, she still starts every time. However, time and travel are taking their toll.
3rdly, Findlay has medical needs as well. Findlay was born with bi lateral clubbed feet. He's been in medical casts weekly since 2 weeks old. He recently had surgery as well. His condition is fortuantely only a bigger issue the first few years.
I work at a job I love and have been there going on two years this next spring. I've been blessed and beyond fortunate that they have worked with me and my family with our ever changing moments. My hours have been cut and my wife stays home because the cost of child care for children who need knowledgeable monitoring.... Isn't cheap. Ethan has multiple seizures a week and sometimes multiple a day. A quick Google search on his different medications, equates to about $300K a year without ins. Thank God we have insurance!
Last month I had reached out to the Johnny Burke Children's Foundation. With Christmas fast approaching and the financial burden and upcoming financial stressors on the mind, I asked for help to provide some Christmas magic for my family. Well, Johnny came through with the help of a great person named Mitch at the USDA. The amazing people at the USDA provided us with Christmas gifts for the family. Johnny and his foundation came through with some funds as well to help us get caught up on a few priority bills and get some Christmas gifts for the kids. We are BEYOND Greatful to them ALL!
In my talks with Johnny, he thought maybe going a Gofundme route may help us more as our need is continuously ongoing, especially with Ethan. I was/am hesitant just because of prices sake. But he's right. Looking ahead, it's still nerve wracking. All the travels and worry. We are in severe need of moving our family of 5 ppl and 2 dogs out of our two bedroom apartment that we have outgrown on bad level.
I put a goal of 5K. I did that because I'd like to be able to revitalize our moving fund we had set aside that Covid ate. I am also hoping to upgrade to a better primary vehicle that fits our family and long distance traveling needs. I've been planning to do that during tax season. Realistically, that's going to probably be closer to when hes having surgery. I'm trying to avoid a major car payment that could hurt us. Money donated is going towards keeping the current car going as it needs some more front end work and going towards replacement in tax season. Also, lodging and travels for the extensive medical trips.
We also document Ethans situation on Facebook and you can follow that @
https://www.facebook.com/groups/385111088886375/?ref=sharehttps://www.facebook.com/groups/385111088886375/?ref=share
If you made it this far, Thank You.
If you'd like to learn more about TSC you can visit the TSALLIANCE.ORG