Kailyn's Medical Expenses

Kailyn is a Smart, Beautiful 15yr old girl with a huge heart.  She always puts the needs of others before her own and this includes carrying the burden of being chronically ill.

Kailyn suffers from a rare congenital disease called Median Arcuate Ligament Syndrome (MALS),  this has caused her years of pain suffering and is currently costing her some of the best years of her life. 

After years of dealing with pain and Gastrointestinal issues.   Everything came to a breaking point in November 2018 when Kailyn’s pain heightened and she began throwing up everything including water.  She has been on a feeding tube since December 2018 and has lost nearly 50lbs due to her inability to get proper nutrition.

Kailyn been seen by specialists all over the Mid-West, University of Iowa, MAYO, Childrens Mercy of Kansas City, Nationwide Childrens Hospital in Ohio and the University of Chicago.  Doctor after Doctor said she was too complicated and said they didn’t know how to help her or passed her case on to someone else.  One organization claimed that her condition was psychological and offered to admit her to a 3 week Intensive Inpatient Program where they planned to teach her to swallow her vomit and ignore the pain.  Um-no!  Finally the University of Chicago confirmed that she had MALS.

MALS can ONLY be treated with surgery, and there are only a handful of surgeons in the nation that address all components of MALS.  A few weeks ago we met with a great surgeon from Connecticut who has a 92% success rate.

Kailyns surgery will entail an incision from belly-button to sternum where the surgeon will release the median arcuate ligament,  which removes pressure from the artery and then the surgeon will remove the celiac plexus nerves that have been aggravated all this time,  in  Kailyn’s case the celiac plexus nerves have tethered her Celiac Artery and her Superior Mesenteric Artery, the 2nd of 3 major arteries of the abdomen, together so the surgeon will have to separate those as well.

We have been warned,  this surgery is hard and recovery can be harder,  it is anticipated that we will be in Connecticut for a total of 3 weeks for Pre-Surgical Appointments, Surgery, Recovery and Post-Surgical Appointments. We will do everything we can to ensure that our girl gets everything she needs but costs are adding up,  with countless Dr visits, Hospitalizations, and traveling all over to find out what is really wrong as well as missed time from work this last year has been draining financially and emotionally.  Going into a new year, 2020, means a new benefit year with insurance so we will have to meet our deductible and co-insurance again, we will have more unpaid time from work and the expense of traveling and living in Connecticut for 3 weeks -  well its just a lot.

What is Median Arcuate Ligament Syndrome (MALS)

MALS is a RARE,  congenital disease where, the diaphragm is positioned too low in a person. The low hanging diaphragm causes the median arcuate ligament (the ligament that holds the diaphragm in place) to compress the Celiac Artery, a major branch of the aorta that delivers blood to the stomach, liver, and other organs of the digestive system.  The pressure on the artery causes a change in blood flow, as well as pressure on the surrounding nerves causing them to become inflamed causing extreme pain in the upper abdomen in addition to Nausea, Vomiting, bowel issues as well as Gastroparesis (a disease where the stomach is in essence paralyzed and cannot digest food normally).

Many people with MALS, including Kailyn,  also have a genetic disease called Ehlers-Danlos Syndrome (EDS) and some Doctors feel that this is ultimately the cause of MALS.  EDS is a connective tissue disorder.  Connective tissue is what the body uses to provide strength and elasticity; normal connective tissue holds strong proteins that allow tissue to be stretched but not beyond its limit, and then safely return that tissue to normal. Connective tissue is found throughout the body, and EDS causes structural problems.