The Harader family delivered a beautiful baby girl on July 13, 2011, Shortly after Emalin’s arrival into this world her Mom and Dad realized that something was “just not right”; she was not holding down any of her food, and not gaining weight. After many trips to the pediatrician Emalin was put into the hospital where extensive and invasive testing began. At around 4 months of age she was diagnosed with a rare genetic disorder named Beckwith-Wiedemann syndrome (B.W.S.). Emalin’s Parents were informed that this is a non curable life-threatening syndrome that causes numerous other illnesses.
Since the day in November of 2011 that Emalin was diagnosed she has spent 77 plus weeks in and out of the hospital; she has had multiple surgeries where they’ve removed 98% of her pancreas (to keep her blood sugars at a level that will not cause brain damage), they have taken 10 portions of her bowel and completely mal-rotated her entire intestinal tract in attempt to restore blood flow. In addition they have removed her gallbladder, appendix, and have attempted feeding her into a j-junostomy tube located in the lower third part of her intestines. None of this has worked. Emalin is now in complete intestinal failure and is bleeding internally she has received multiple blood transfusions and struggles to fight infection growing within her rapidly failing body. As a result she is now being evaluated by top doctors in the nation at Cleveland Clinic Childrens’ Hospital for a multiviceral (more than three abdominal organs) transplant. She is totally dependent on TPN (iv nutrition) to sustain life, and takes 50 plus medications per day.
These above mentioned diagnoses’ are just SOME of the daily struggles that Emalin and her family face on a day to day basis; there are many more. The list unfortunately goes on and on. We know your time is valuable; So “cutting to the chase” if you will, as previously mentioned, Emalin is at this time is being evaluated for Transplant which is a year to year and a half process pre-transplant and approx 6-12 months inpatient post transplant. All of which comes with only a 53% chance of survival. We pray continuously that God will allow her to remain infection free and keep all blood levels at an acceptable level so we can make it to the day that organs are available to her.
However, in addition to the financial stress from uncovered medical expenses, the cost of SO many weeks away from home, fuel to countless appointments, ect. Emalin’s family is now required to find recourses that will help with the cost of the testing and several extended trips to Cincinnati Children’s Hospital, where 1 of 3 doctors in the United States has a hope of keeping Emalin here with us.
As we are painfully aware that there are many families in need, we are asking and urging you to help this family. This situation has brought a “mini I.C.U.” into their home and a wonderful little girl that finds a daily struggle fighting for life. This is not something they have asked for. This situation has been handed to them, and they have met the challenge, “done what it takes”, and for them it has taken putting pride to the side and asking for your help! Any donation that you are willing to provide is appreciated beyond comprehension as this is Emalin’s chance for life!