Help with Bailey’s MALS surgery in California!
Donation protected
Hello family, friends, and everyone who is kind enough to read this message. I am Bailey‘s mom, Joy Burkholder. We are coming to GoFundMe asking for your help.
Our sweet girl has been living with median arcuate ligament syndrome (MALS) for more than four years now. It took us almost 2 1/2 years to get a formal diagnosis for Bailey’s unexplained abdominal pain. She has seen 10 doctors, had many tests and finally got a diagnosis a year and a half ago. The diagnosis is called median arcuate ligament syndrome. It’s rare. About 2 out of 100,000 people have it.
Median arcuate ligament syndrome, or (MALS), is a rare, complex, under-diagnosed disease that often causes chronic, debilitating pain in the upper part of the abdomen. People with MALS are born with an anatomic abnormality of the their diaphragm and median arcuate ligament, causing the median arcuate ligament to compress the celiac artery, a major branch of the abdominal aorta, and the celiac nerve ganglion and plexus of nerves. This pressure can lead to blood flow changes, as well as nerve entrapment and inflammation, resulting in extreme pain, sitophobia (fear of eating), significant weight loss, constipation and diarrhea. Compressions in this area also cause a continuous state of fight or flight as well as adrenaline surges. Bailey almost always has this feeling.
We struggled to find a Doctor who could diagnose her. We struggled to find a doctor that understood the disease. And we struggled to find a doctor that could fix her compressions. We even struggle to find solutions for her pain, which has left her admitted to the hospital twice this year for a total of 9 days. I’ve lost count of ER trips.
Bailey has a hard time doing things that typical children do every day without thought. Bailey can only eat a few bites of a meal before she has pain. Bailey can’t sleep more than a few hours at a stretch before having pain. It’s even hard for Bailey to leave the house because she knows she will be in pain at any moment, without warning. She had to leave her job that she loved at Wish’s. She wasn’t even able to attend her senior year of high school. She had to homeschool from her bed. She missed out on all of her senior activities; she did manage to attend graduation for her diploma. And she didn’t even bother applying to colleges. She feels like this isn’t in her future because of MALS. (This made me cry while typing.)
THERE IS HOPE!! We have found THE doctor to fix her compression. His name is Dr Danny Shouhed. He is located in Santa Monica, California. He has done 130 of these compression repairs for people with MALS. Half of those surgeries are repairs of other doctors work. He is by far the most experienced doctor. You can check him out online at
Www.drdannyshouhed.com.
Here’s why we are asking for help. Dr. Shouhed is not in network for our insurance. We are currently working with his office and the insurance company AETNA to get a gap exception. Basically, that means they will make the doctor an in network doctor for this procedure one time. As an out of network doctor, we would have to pay $18,000 or as an in network doctor, we’d pay $2,400. Hotels will cost $5,600. Airfare and Uber are estimated at $3,500. I am estimating this to cost around $27,000. If we get the gap exception, I’m guessing around $12,500. Praying that we get it!! We will have an answer by July 25th for the tentative August 20th surgery date.
If you could donate $5, it would truly change her LIFE! Please share. If you know Bailey, you know how deserving she is for a better life. She is the sweetest, most loving and selfless person I know. Even if you can’t donate, just pray for her. We have been feeling those prayers for a long time.
Thank you so very much for taking the time to read this. You have our deepest gratitude!!
Truly,
Lance, Joy, Breanne and Bailey
Our sweet girl has been living with median arcuate ligament syndrome (MALS) for more than four years now. It took us almost 2 1/2 years to get a formal diagnosis for Bailey’s unexplained abdominal pain. She has seen 10 doctors, had many tests and finally got a diagnosis a year and a half ago. The diagnosis is called median arcuate ligament syndrome. It’s rare. About 2 out of 100,000 people have it.
Median arcuate ligament syndrome, or (MALS), is a rare, complex, under-diagnosed disease that often causes chronic, debilitating pain in the upper part of the abdomen. People with MALS are born with an anatomic abnormality of the their diaphragm and median arcuate ligament, causing the median arcuate ligament to compress the celiac artery, a major branch of the abdominal aorta, and the celiac nerve ganglion and plexus of nerves. This pressure can lead to blood flow changes, as well as nerve entrapment and inflammation, resulting in extreme pain, sitophobia (fear of eating), significant weight loss, constipation and diarrhea. Compressions in this area also cause a continuous state of fight or flight as well as adrenaline surges. Bailey almost always has this feeling.
We struggled to find a Doctor who could diagnose her. We struggled to find a doctor that understood the disease. And we struggled to find a doctor that could fix her compressions. We even struggle to find solutions for her pain, which has left her admitted to the hospital twice this year for a total of 9 days. I’ve lost count of ER trips.
Bailey has a hard time doing things that typical children do every day without thought. Bailey can only eat a few bites of a meal before she has pain. Bailey can’t sleep more than a few hours at a stretch before having pain. It’s even hard for Bailey to leave the house because she knows she will be in pain at any moment, without warning. She had to leave her job that she loved at Wish’s. She wasn’t even able to attend her senior year of high school. She had to homeschool from her bed. She missed out on all of her senior activities; she did manage to attend graduation for her diploma. And she didn’t even bother applying to colleges. She feels like this isn’t in her future because of MALS. (This made me cry while typing.)
THERE IS HOPE!! We have found THE doctor to fix her compression. His name is Dr Danny Shouhed. He is located in Santa Monica, California. He has done 130 of these compression repairs for people with MALS. Half of those surgeries are repairs of other doctors work. He is by far the most experienced doctor. You can check him out online at
Www.drdannyshouhed.com.
Here’s why we are asking for help. Dr. Shouhed is not in network for our insurance. We are currently working with his office and the insurance company AETNA to get a gap exception. Basically, that means they will make the doctor an in network doctor for this procedure one time. As an out of network doctor, we would have to pay $18,000 or as an in network doctor, we’d pay $2,400. Hotels will cost $5,600. Airfare and Uber are estimated at $3,500. I am estimating this to cost around $27,000. If we get the gap exception, I’m guessing around $12,500. Praying that we get it!! We will have an answer by July 25th for the tentative August 20th surgery date.
If you could donate $5, it would truly change her LIFE! Please share. If you know Bailey, you know how deserving she is for a better life. She is the sweetest, most loving and selfless person I know. Even if you can’t donate, just pray for her. We have been feeling those prayers for a long time.
Thank you so very much for taking the time to read this. You have our deepest gratitude!!
Truly,
Lance, Joy, Breanne and Bailey
Organizer
Joy Burkholder
Organizer
Scottdale, PA