Morgan Felty

Meet my 6 year-old daughter Morgan Felty Psychological Effects Morgan was diagnosed last year with Eosinophilic esophagitis (EE). We had no knowledge of what EE was, or what it held for us as a family; we have a 12 year old son, Nicholas, who has Asberger’s Syndrome, a form of high-functioning Autism. Our hopes of having a child that would grow up to be healthy productive member of society were crushed, since our son requires constant supervision and therapy. My wife, Brandy, has homeschooled our son, since it provides the best care for him, as well as the time that is needed to take care of a child with special needs; thankfully, this has also given us the freedom to accomplish visits and multiple trips to the physician’s offices for consultations, checkups, biopsies and endoscopies. We were faced with a question of the worst case scenario, which is that she will have a feeding tube for the rest of her life and losing her ability to swallow because the esophagus hardens. EE is a lifelong condition with no known cure. At this point, her physician is considering surgically implanting a “G Button” which allows her to be removed from the feeding tube, and allows us to feed her directly into her stomach, bypassing her esophagus.

Physiological Effects Currently, Morgan is on a feeding tube with an elemental diet of Elecare, which cost approximately $60/can. She requires 1 ½ cans daily. She currently ingests steroids, antiinflammatory, and acid reducing medications. Nobody is sure of the long-term effects of a constant intake of strong steroids usually given in an inhaler to asthmatics and patients with Emphysema. Without insurance, her medications would cost nearly $1,650 monthly. When she was given her first feeding tube 4 months ago, this was the only caloric intake that she was allowed to have. By having her on an elemental diet, this allowed her esophagus to heal, and for the symptoms to subside. The pitfall to being on this diet of Elecare is that insurance did not cover the cans since it was considered a “supplement”. We had to pay over $1,200 for the first month supply of formula which was a great burden for a single-income family. Thankfully, after the month had passed, the “supplement” was deemed to be “sustenance” after many phone calls and e-mails… a moot point considering it was her only form of caloric intake for 3 months. During that time, she did gain weight, and the symptoms subsided until this past month. During this year, I have exhausted most of my accrued vacation time taking time off to help with Morgan, hospital and physician visits.

Outlook and next steps Currently, Morgan’s physician has been in touch with some of the leading researchers in the GI field, and has recommended that we meet with a team of doctors for possible consideration for field trials of experimental medications and treatments. We have been given information about a team of doctors and researchers that are located in Aurora, CO at The Children’s Hospital. The Gastrointestinal Eosinophil Disease Program is a weeklong full-spectrum program that has a team of dedicated personnel working with cutting-edge equipment, tests, research and technology solely for conditions like my daughter has been diagnosed with. It’s a specialist program, and offers treatment and counseling not only for the patient, but the caregivers as well. As a parent, I want to make sure that I provide the best care and treatment that I can for my children, but frankly, there’s only so much that our family can afford. We want to make sure that we explore every option that’s available; failing to do so would render us remiss in our parental responsibilities.

What is needed? We need help defraying the expenses that we will be incurring by taking this necessary trip to Colorado. We estimate that we need approximately $2,800 to cover transportation, food and accommodations. Any additional funds that are collected would help greatly offset any loss of income as a consequence of this condition. At this point, any assistance that we get is a huge benefit, when we’ve had so much working against us in the 12 years that my wife and I have been married. Respectfully, Mark Felty

What is eosinophilic esophagitis (EE)? Eosinophilic esophagitis (EE) is caused by the inflammation of the esophagus by eosinophills. The diagnosis is made only when other disorders have been ruled out, and there are increased numbers of eosinophils in the esophagus. Eosinophils are a type of white blood cell which are primarily associated with allergies but are also found in other inflammatory diseases. The inflammation also causes additional abdominal symptoms.

How is it diagnosed? While symptoms may be suggestive, an endoscopy and biopsy are necessary to make the diagnosis. Patients must have other causes for inflammation excluded before a diagnosis of EE can be made.

How is it treated? Medical management consists of steroids in either pill or liquid form or topical steroids administered by a metered dose inhaler. Nutritional management consists of eliminating specific foods that have been identified as likely allergens, or the use of an elemental formula.

Who gets it, and can it be prevented? Eosinophilic esophagitis typically affects boys more often than girls. There has been no identified method to avoid getting it. To date, data suggests that EE is a lifelong disease.

Why come to The Children’s Hospital for treatment of this condition? In the Rocky Mountain region, the Gastrointestinal Eosinophilic Disease Program is the only program to offer comprehensive care for children with eosinophilic esophagitis. The mission of the Gastrointestinal Eosinophil Diseases Program is to improve the quality of life for patients and families affected by EGIDs. The GEDP offers a comprehensive evaluation for patients suspected of having EGIDs and for children who have a previously established diagnosis. Patients referred to the GEDP will receive a thorough review of their: - Medical records - Pathology slides - Endoscopic procedures - Allergy tests A multidisciplinary evaluation is coordinated by a physician assistant and nurse and may also involve board-certified pediatric gastroenterologists and allergists, nutritionists, and feeding specialists when appropriate. Specialized social work services as well as psychological services are readily available. Additional testing may need to be performed including endoscopy, allergy testing and radiographic analysis.

Anticipated expenses Depart Oct 16, 2009 Return Oct 28, 2009 Airfare = $228.01/person + $21.20 taxes & fees + $16.00 insurance = $795.63 Hotel = 8 nights $679.92 + $83.97 tax = $763.89 Transportation = 12 days ground transportation @ $40/day = $480 Food = $600 Incidentals (parking, gas, etc) = $120 Estimated Total = $2,759.52