Please Help Ellie fight for her life against MALS

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Seventeen-year-old Ellie has been battling digestive issues going back to when she was 7 years old, and she has persistent vomiting, expelling everything she eats or drinks within minutes. We have been pursuing a correct diagnosis for Ellie for years, seeing doctors at Cook Children’s in Dallas, Children’s Hospital and Specialty Clinics in Dallas and Plano, and Texas Children’s Hospital in Houston and Katy, amongst other hospital systems and private practitioners. This past April, she had a CT angiogram, which indicated she has a rare condition called Median Arcuate Ligament Syndrome, or MALS. MALS happens when the median arcuate ligament (a band of tissue in the upper belly area) presses on the artery that sends blood to the stomach, spleen, and liver, resulting in abdomen pain, fear of eating, bloating, diarrhea, nausea, and vomiting. More information on MALS can be found here: Median arcuate ligament syndrome (MALS) - Symptoms and causes - Mayo Clinic. Subsequent Doppler ultrasounds have confirmed this diagnosis and revealed that the compression of the celiac artery is getting worse.

In addition to MALS, Ellie has also been diagnosed with several co-morbidities including Amplified Musculoskeletal Pain Syndrome (AMPS), visceral hyperalgesia (deep pain affecting organs and structures deeper inside the body), medical PTSD, postural orthostatic tachycardia syndrome (POTS), and most recently, biliary dyskinesia. Moreover, she has had a persistent migraine that has lasted for months and is unbearable and debilitating. Ellie spends a large amount of time in the emergency room to get IV hydration (every 1-2 days) and see doctors to treat her various conditions.

As a result of prior incorrect diagnoses and treatments, Ellie has had numerous prior surgeries, which have left her with lots of scar tissue. Additionally, MALS surgery is incredibly complicated with a national success rate of about 50%, and only a handful of surgeons with a success rate of greater than 75%. Due to the rarity of MALS, the complexity of the surgery, Ellie’s co-morbidities, and her existing scar tissue, we are pursuing surgery with a top MALS surgeon located several states from our home.

Ellie’s stepdad is a disabled war veteran, and her mother is also disabled. This limits our ability to afford the anticipated medical expenses, as well as the costs associated with traveling out of state to pursue treatment. In addition, Ellie was recently hospitalized for four weeks due to becoming septic, in a hospital hours from our home, and we are still financially recovering from that stay. We are asking for help from the world in an effort to get our daughter the care she needs so that she will have a chance to live outside of the ER and doctor’s offices for more than a few days at a time, a chance at a better quality of life, and a chance at a happy future.

Ellie has lost most of her childhood to her illnesses. Please help us provide her with a better adulthood. Thank you from the bottom of our hearts and for any assistance you can provide.