This fundraiser is meant to raise money for Sara's medical bills, medications, upcoming procedures, and tests and procedures insurance will not cover. As many of you know Sara was diagnosed with Heterotaxy in June 2011; however, she was born with this disease and was symptom free until she became pregnant in June of 2010. This is a very rare disease that affects the placement of organs in the body, and it is estimated to happen 4 per 1million births. Currently there is no treatment or cure for this disease. The majority of children born with this disease die by the age of 5. Heterotaxy is a spectrum disease; this means that each case is different. Patients with Heterotaxy also have several other serious medical conditions.
Sara has been diagnosed with Polysplenia (meaning she has several spleens), Intestinal Malrotation, Interrupted and Narrowed IVC with azygous continuation (this affects her heart), Hypoplastic Pancreatic Tail, Calcification within the Liver, and several vascular anomalies throughout her body. In addition to having Heterotaxy Sara also suffers from Fibromyalgia, Irregular Heartbeat, Bilateral Ovarian Cysts and Irritable Bowel Syndrome. In July of 2011 Sara underwent Ladd's Surgery to prevent her Intestinal Malrotation causing death.
Sara is in constant pain throughout her entire body. Due to this intense pain Sara had to stop working, and most-likely will not be able to return to work in the future. As Sara's condition continues to progress the medical bills continue to grow. Sara's husband Charlie is currently the only person in the home working, so they are having a very hard time paying for all of the medical treatments. There are several medical treatments that would help Sara; however, her insurance does not cover them, or the co pay is too expensive. Sara will also need several more surgeries in the future due to her intestinal and bowel issues. Sara has put off her own treatment because she is unable to afford it. This is a major issue, because not keeping up with treatments is causing her condition to rapidly get worse.
This disease has affected every aspect of Sara's life, as well as the life of her husband Charlie and their son Caleb. In addition to quitting her job Sara has also had to stop taking college courses because she is unable to finish her mandatory campus classes. Sara had dreamed of being a Medical Assistant, in hopes of helping others like herself. Although Sara's condition is very serious she has been medically cleared to have more children in the future by specialists at Jefferson University Hospital. Sara and her husband Charlie hope to grow their family; however, in order to do so Sara must undergo several more tests and procedures to get her symptoms under control so it is safe for her to carry another pregnancy. Financial restrictions have prevented Sara from being able to have these tests and procedures.
We are hoping to raise some money to help Sara and her family. Sara has medical bills in excess of $2,000 that currently cannot be paid. She is also in need of several more medical treatments; however, she will not be able to get them due to her current financial situation. There are several alternative medical treatments that Sara would need on a weekly basis also not covered by insurance. Sara also is hoping to be able to attend The National Heterotaxy Conference that will be held June 2013 in Boston. This would be a very important trip for her as the nation’s top doctors on Heterotaxy and its sister diseases will be attending. If Sara is able to attend she will meet other patients with this rare disease, and get some very helpful information from specialists, possibly life altering information.
Sara will always have Heterotaxy and the conditions that go along with it, but with the proper medical treatment she will be able to have a much more functional life. She is hopeful that if she is able to receive the treatments she needs, her family's life will greatly improve. As I mentioned most people with this disease die by the age of 5, but the risk does not go away for those who live longer. This disease will most likely take Sara's life one day. Doctors are not able to give a life expectancy for individuals who live past the age of 5, so each day is a blessing for Sara and her family. Sara is trying her best to live her life to the fullest; since she has no idea how much longer she will be on this earth. Sara's biggest fear is that she will not live to see her son grow up.
We thank you for taking the time to read this, and thank you for any help you are able to give.