Help Gavin get to Mayo Clinic
Spende geschützt
I will try my best to keep it short and simple. Everyone that follows Gavin knows our sweet tubie baby has had a LONG road to travel since birth. He was admitted to UNC Chapel Hill at 5 days old and we lived there for a very long 37 days!
After weeks of sleepless nights and days of continuous tears he finally had surgery to have his G-tube placed so we could be discharged. We have made the 2 hour trip to UNC countless times in the past few months trying to keep up with follow ups and tons of testing and ER visits. The last batch of testing done by Neurology showed a mutation in one of the genes that causes muscular dystrophy but he doesn't have two copies of it so that means he has some type of Congenital Muscular Disease but not sure exactly which one. The testing at UNC is pretty much at a stand still since a few months ago they considered Gavin to be thriving. Anyone that keeps up with him thru Facebook knows that's not entirely the case. Gavin has struggled severely during these last few months when it comes to his airway difficulties and Laryngomalacia He still currently has problems aspirating and is collecting alot of scar tissue on his lungs with every aspiration. His feeding by mouth has slowed down and he's starting to lose weight again. He's also starting to miss cognitive milestones which is something we were afraid of since they said from the beginning his brain was normal.
As parents our only jobs are to protect our children and be their advocate at all times! I've said from day one that I would travel the world to get what he needed if I had to. Well guys a blessing has very unexpectedly fallen into our laps and Gavin was just accepted into Mayo Clinic in Minnesota. This is an amazing opportunity that not all families are given. We will have to go out there for at least a week where he will see Neurology, Pulmonology, GI, ENT and Ortho. They will do their work ups and testing within that week and then work closely with UNC afterwards. I personally spoke with the Neuro Surgeon that will be over seeing his care and he sounded very optimistic about Gavin having a confirmed diagnosis and treatment plan.
I spoke with the financial department and unfortunately they do not accept his insurance so all expenses will be out of pocket. I am applying for their charity care program but we still have to have $5,000.00 upfront before we can be seen. Everything after that will be billed to us or covered by the charity care program. I won't even go into how much all the testing will be if we are not approved by the charity care program. We are also responsible for our own travel expenses which will be about $3,000.00. We will most likely drive the 20 hour trip because it is about 600 dollars cheaper. Mayo clinic does offer Ronald McDonald housing but it is very hard to get into due to the amount of patients they have. There are Hotels near Mayo Clinic that offer discount prices to patients and their families. Even with that we are still looking at a pretty expensive trip.
I wouldn't be able to live with myself if I didn't at least try to make this happen for him. If there is even a 1% chance they can find something UNC hasn't or provide more tools for his future then it is hands down worth it!! We are hoping to be out there the beginning of the year. Yes, Minnesota in January will be interesting!
Nobody likes to be in the position where they have to ask for help financially but you do what you have to do when it comes to your children. We are asking if anyone is able to donate please do. Any amount will help us reach out goal of getting Gavin into one of the best hospitals in the world. If you are unable to donate then please help spread the word and share this page and send up some prayers that we are able to raise the money needed. We are working on other fundraiser options so please get in contact with me or Daniel if you have any suggestions. I will also be making T-Shirts with a #TeamGavin design that will go towards the trip.
I also ask that anyone who donates PLEASE keep documentation of the amount given so if by some chance we are not able to make this trip happen then we can make sure all donations are returned.
I want to say Thank you in advance to anyone who donates or shares this page or keeps him in your thoughts and prayers. Gavin has a strong support system behind him and you guys are amazing!
After weeks of sleepless nights and days of continuous tears he finally had surgery to have his G-tube placed so we could be discharged. We have made the 2 hour trip to UNC countless times in the past few months trying to keep up with follow ups and tons of testing and ER visits. The last batch of testing done by Neurology showed a mutation in one of the genes that causes muscular dystrophy but he doesn't have two copies of it so that means he has some type of Congenital Muscular Disease but not sure exactly which one. The testing at UNC is pretty much at a stand still since a few months ago they considered Gavin to be thriving. Anyone that keeps up with him thru Facebook knows that's not entirely the case. Gavin has struggled severely during these last few months when it comes to his airway difficulties and Laryngomalacia He still currently has problems aspirating and is collecting alot of scar tissue on his lungs with every aspiration. His feeding by mouth has slowed down and he's starting to lose weight again. He's also starting to miss cognitive milestones which is something we were afraid of since they said from the beginning his brain was normal. As parents our only jobs are to protect our children and be their advocate at all times! I've said from day one that I would travel the world to get what he needed if I had to. Well guys a blessing has very unexpectedly fallen into our laps and Gavin was just accepted into Mayo Clinic in Minnesota. This is an amazing opportunity that not all families are given. We will have to go out there for at least a week where he will see Neurology, Pulmonology, GI, ENT and Ortho. They will do their work ups and testing within that week and then work closely with UNC afterwards. I personally spoke with the Neuro Surgeon that will be over seeing his care and he sounded very optimistic about Gavin having a confirmed diagnosis and treatment plan.
I spoke with the financial department and unfortunately they do not accept his insurance so all expenses will be out of pocket. I am applying for their charity care program but we still have to have $5,000.00 upfront before we can be seen. Everything after that will be billed to us or covered by the charity care program. I won't even go into how much all the testing will be if we are not approved by the charity care program. We are also responsible for our own travel expenses which will be about $3,000.00. We will most likely drive the 20 hour trip because it is about 600 dollars cheaper. Mayo clinic does offer Ronald McDonald housing but it is very hard to get into due to the amount of patients they have. There are Hotels near Mayo Clinic that offer discount prices to patients and their families. Even with that we are still looking at a pretty expensive trip.
I wouldn't be able to live with myself if I didn't at least try to make this happen for him. If there is even a 1% chance they can find something UNC hasn't or provide more tools for his future then it is hands down worth it!! We are hoping to be out there the beginning of the year. Yes, Minnesota in January will be interesting!
Nobody likes to be in the position where they have to ask for help financially but you do what you have to do when it comes to your children. We are asking if anyone is able to donate please do. Any amount will help us reach out goal of getting Gavin into one of the best hospitals in the world. If you are unable to donate then please help spread the word and share this page and send up some prayers that we are able to raise the money needed. We are working on other fundraiser options so please get in contact with me or Daniel if you have any suggestions. I will also be making T-Shirts with a #TeamGavin design that will go towards the trip.
I also ask that anyone who donates PLEASE keep documentation of the amount given so if by some chance we are not able to make this trip happen then we can make sure all donations are returned.
I want to say Thank you in advance to anyone who donates or shares this page or keeps him in your thoughts and prayers. Gavin has a strong support system behind him and you guys are amazing!
Organisator
Dani Akers
Organisator
Dunn, NC
