Having just three of these symptoms will get you a clinical diagnosis of Beckwith-Wiedemann Syndrome. Our little miss Faith has all of them.
Her abdominal wall defect is known as a giant omphalocele, meaning that some of her abdominal organs are not inside her abdomen, instead they are inside the umbilical cord now stretched and referred to as a "sac". Her sac includes her intestines, her gallbladder, and her liver.
My brother and his family are relocating to the Philadelphia area in order to get Faith the best care possible. She will soon be transferred to the Childrens Hospital of Philadelphia (CHOP). They see 30-50 cases of omphalocele every year, have a Beckwith Wiedemann team, and have one of only two centers in the United States for congenital hyperinsulinism. They are also ranked highly in each of the fields that will be involved in Faith's care over the next few years: they are 2nd in the US for Neonatology, 3rd for Pediatric cancer, 1st for Pediatric Diabetes and Endocrinology, 2nd for Pediatric Gastroenterology & GI Surgery, and 2nd for Pediatric Nephrology. CHOP is the best place she can be to get the care she will need.
As soon as my brother and his wife get their transfer date they will be heading to New Jersey and will be finding a place to live in the Philadelphia area. We are asking for help with relocation costs and travel expenses so that they can visit with her at the hospital and attend her surgeries and procedures. The proceeds of all the donations made will go directly to Corey and Kristin for their relocation. Even if you can not donate we also ask that everyone will pray continuously for her to have successful recovery in all of her surgeries, and for us and her doctors to be blessed with wisdom in providing her care. Thank you!
- Traci Davis
- Joyce Dais
- Amanda Duncan
- Hannah Harris
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