Coles liquid lunch project
Donation protected
This is our boy Cole, he has been diagnosed with Achalasia. He is a spunky 12 year old boy caught with a rare disease in children. In mid May he began to have trouble getting food he was eating to his stomach. The food seemed to get caught and come back up without ever hitting the stomach. By Mid June he was not getting any nutrition or liquids into his body. After several trips to the hospital for dehydration something had to be done. We had real trouble getting a doctor to even take us seriously. Until finally, on July 10 Cole had to be admitted to the hospital for malnutrition and dehydration. He weighed just 56 pounds at the time of being admitted to the hospital. Cole spent 7 days having multiple tests and procedures to find out what was going on. A feeding tube was placed from his nose to his stomach to get him some kind of nutrition. He will remain on this feeding tube until he has surgery to relieve his symptoms.
Cole was officially diagnosed with Type II Achalaisia a motility disorder of the esophagus. Basically what happens is the esophagus does not contract and release while he swallows food or drink. The trap door to his stomach also fails to open and nothing can pass. Whatever gets ingested comes back up as, a mucus filled mess that he must spit out. This is a rare disease and only affects 1 in a million kids around the world. This has made it tricky to find the right medical care team, as well as insurance approval for the correct procedure.
There are two surgical options to fix this disorder. They both accomplish the same task of cutting the muscle around the esophagus and the trap door to the stomach. With the rarity of this disorder we are left with one surgical option in our state. The surgery available in our state is somewhat out of date, rarely performed, and is more invasive. The preferred procedure that is less invasive and measurable at the time of the procedure isn't even offered in our state. We have found an experienced surgeon that specializes in this disorder. He performs the preferred surgery regularly and he is the go to doctor for this disorder. The surgeons name is Dr. Timothy Kane and he works out of Children,s National hospital in Washington DC. The down side is Children's National hospital is 2000 miles away from our home. This is a world class facility and Dr. Kane is at the top of his field in his surgical abilities. We couldn't be more happy with the help they have provided us so far. We are excited to go to DC and get Cole surgery from a hospital that really cares. The whole team at Children's National understands the impact this is having on our life and they are going above and beyond to help us out.
Our insurance company has other ideas about Cole's treatment plan. They say that the procedure Cole needs is experimental and they won't cover the cost of the procedure. With Cole's condition being so rare the procedure won't meet the data set required to get out of the experimental stage for some years come. The cost of Cole's surgery will be $25,000 discounted from $50,000 for cash payment. That is just for the medical care and does not include travel expenses. We will need to spend about 10 days away from home in the DC area. We have surgery scheduled with or without insurance and we will need to pay the entire cost of the surgery up front prior the procedure. We have had to make the difficult decision between financial security and the well being of our child in short order.>
We appreciate any help you can give to us and we don't want to impact your life. So please just do what you can comfortably. We have already decided that if we meet or exceed our fundraising goal that we will donate anything extra to a child in need at Children"s National. At the end of the day you can rest assured that you are going to help a sick kid either way with your donation.
Cole was officially diagnosed with Type II Achalaisia a motility disorder of the esophagus. Basically what happens is the esophagus does not contract and release while he swallows food or drink. The trap door to his stomach also fails to open and nothing can pass. Whatever gets ingested comes back up as, a mucus filled mess that he must spit out. This is a rare disease and only affects 1 in a million kids around the world. This has made it tricky to find the right medical care team, as well as insurance approval for the correct procedure.
There are two surgical options to fix this disorder. They both accomplish the same task of cutting the muscle around the esophagus and the trap door to the stomach. With the rarity of this disorder we are left with one surgical option in our state. The surgery available in our state is somewhat out of date, rarely performed, and is more invasive. The preferred procedure that is less invasive and measurable at the time of the procedure isn't even offered in our state. We have found an experienced surgeon that specializes in this disorder. He performs the preferred surgery regularly and he is the go to doctor for this disorder. The surgeons name is Dr. Timothy Kane and he works out of Children,s National hospital in Washington DC. The down side is Children's National hospital is 2000 miles away from our home. This is a world class facility and Dr. Kane is at the top of his field in his surgical abilities. We couldn't be more happy with the help they have provided us so far. We are excited to go to DC and get Cole surgery from a hospital that really cares. The whole team at Children's National understands the impact this is having on our life and they are going above and beyond to help us out.
Our insurance company has other ideas about Cole's treatment plan. They say that the procedure Cole needs is experimental and they won't cover the cost of the procedure. With Cole's condition being so rare the procedure won't meet the data set required to get out of the experimental stage for some years come. The cost of Cole's surgery will be $25,000 discounted from $50,000 for cash payment. That is just for the medical care and does not include travel expenses. We will need to spend about 10 days away from home in the DC area. We have surgery scheduled with or without insurance and we will need to pay the entire cost of the surgery up front prior the procedure. We have had to make the difficult decision between financial security and the well being of our child in short order.>
We appreciate any help you can give to us and we don't want to impact your life. So please just do what you can comfortably. We have already decided that if we meet or exceed our fundraising goal that we will donate anything extra to a child in need at Children"s National. At the end of the day you can rest assured that you are going to help a sick kid either way with your donation.
Co-organizers (2)
Steve Duffield
Organizer
Morgan, UT
Tami Smalley
Co-organizer