Empowering Emalin

For: Emalin Harader
Organizer: Scott & Taunya Harader
$7,065
of $10,000 goal
70% Complete
This fundraiser is closed. Thank you for your support!

The Story

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!

 

Fundraiser Updates

Posted on January 2, 2014 by Scott & Taunya Harader
After much prayer we have made some adjustments to the goal amount. Not in anyway shape or form to appear greedy or ungrateful.  It has been brought to our attention that there are going to be some further expenses that we will be responsible for covering. We are TRULY greatful to each amd everyone of yoi who have offered 1 or 1000's. For those of you who have offered love, prayers & support. We pray for eaxh of you daily that God will blesa you in return 100 fold! From our family to yours THANK YOU FROM THE BOTTOM OF OUR HEARTS! !

Posted on January 2, 2014 by Scott & Taunya Harader
After much prayer we have made some adjustments to the goal amount. Not in anyway shape or form to appear greedy or ungrateful.  It has been brought to our attention that there are going to be some further expenses that we will be responsible for covering. We are TRULY greatful to each amd everyone of yoi who have offered 1 or 1000's. For those of you who have offered love, prayers & support. We pray for eaxh of you daily that God will blesa you in return 100 fold! From our family to yours THANK YOU FROM THE BOTTOM OF OUR HEARTS! !

Posted on December 31, 2013 by Scott & Taunya Harader
EMALIN is again in the hospital fighting another line infection she ia going down around 6pm to remove he central line. We thank you for your prayers and support.  Will update again soon. GOd bless you

Posted on December 25, 2013 by Scott & Taunya Harader
Merry Christmas.! We would like to Thank all of you. For all the love and support you have shown to us during this journey and also this holiday season. Today our prayer is that you will have a blessed day with you and yours!!! Thank you again. EMALIN is doing well and looking forward to her 1st christmas at home around our tree!!! God bless you and we love you!
Merry Christmas from the Haraders

Posted on December 13, 2013 by Scott & Taunya Harader

So as most of you know Emalin does not eat or drink anything, so  I.V. access is life sustaining for her. this morning her IV went bad and until they can clear the infection and place a permanent central line we are trying to keep "regular" I.V.s.  After 16 attempts,14 people (including @ general anestisiologists), 2.5 hours, and 2 doses of sedation...We finally got an I.V. in Emalin. they are considering moving up the surgery if we lose another of the "normal" I.V.'s.
She is finally sleeping hoping the round of night meds and procedures does not wake her. Very tiring and emotionally wearing day! Thank you all for the texts, calls, and messages, the love and support you have all shown we love you!


Posted on December 12, 2013 by Scott & Taunya Harader
There has been a new Face Book page it is still under the Empowering Emalin name but it is a "community page" please visit us and Like our page! love you and thank you!!!

Posted on December 12, 2013 by Scott & Taunya Harader
The intent of this post this morning is just Scott Harader and Taunya Perlak Harader coming to you with an open and greatful heart. We would like to say Thank you we can never express what is truly in our hearts for all the love that has been shown to our family, in EVERY way. This for us has never been about trying to get ahead, or specificlly about money (though this type of support is appreciated as well under the circumstances), we want today to give recognition to ALL th...e support we have recieved. PRAYER, Emotional, unconditonal love, and for the friends we have made and how you have allowed us into YOUR lives to pray for your needs. I know we serve a faithful and amazing God. whatever you are going through keep faith and hope! we just feel that we have not been able to take the time to tell each one of you how much you mean to us! for those of you who have never experienced a situation like alot of us here, we pray fervently that you will never have to. If we have learned nothing through all that God has allowed in the past 2.5 years is that faith in HIM for whatever your situation, love, TRUE friends (however you meet), and being kind without expectaion is what life is all about! you have helped us realize this, If you are feeling alone or if we feel alone, we are NOT. we have our heavenly Father and each other. My heart is sooo full today I hope that this message is clear, and that you know my heart! God bless each of you this Christmas season we love you!

Posted on December 11, 2013 by Scott & Taunya Harader
 
I first like to say that we serve a faithful God...many times since Emalins arrival into this world God has given our faimly "just enough" sometimes time and sometimes money ect however it really helps you depend on Him for all your needs, ...wants, and desires. I also would like to say THANK YOU for all the prayers and love that has been shown our family has no words of apprciation to discribe how we feel.
They confirmed MRSA in Emalin this morning so she was taken to the operating room where they have removed her line. The "bad" news is that we have lost another line spot which is becoming more and more rapidly our LARGEST problem. she is down to four spots and we need to go to transplant with " two perferably three" (Doctors words) the transplant process will take about 1.5 years before organs will be available...so yet again we are calling some angels to come "gaurd over Emi" ....they will be taking her back to the operating room later this week possibly monday to be placing a new line. IF (BIG IF) all goes well this week and the new line is placed and she remains fever free...they say that Emalin may be able to come home middle to end of next week she will continue extra heavy duty antibiotics at home for a while and a lot of extra work with blood draws and things but if all goes well Emalin will have her first Christmas home!!! PLEASE continue to pray that things go well this week and God keeps his hands apon her....We thank you agin. more then words can ever ever express!!! If you are able please consider donating and sharing her page so we can raise awarness and keep the mass prayers going! God bless you and keep you I will update again as soon as possible!


Posted on December 10, 2013 by Scott & Taunya Harader
I have been posting on the empowering emalin fb page but I thought some of you may not have had ann opportunity to get on there so we wanted to update our faithful donators too!!! Emalin is currently inpatient at this time with a fever of unknown origin.  They are doing cultures and other testing (urine and such) to try and find the source of the fever. We are fervently praying that it is something more "minor" as emalin can't afford a nother line loss. As well as it being the Christmas season we would like to join our faimly for her first Christmas at home.God bless you for all your support and continued prayer and spreading the word in hopes to reach our monetary goals as this has place such financial burden on our family!!! Xoxox God bless will update as soon as we have word on any pending tests.

Posted on December 9, 2013 by Scott & Taunya Harader
Please Please Pray Emalin spiked a Temp of 101.3 tonight so she is being readmitted into the hospital. thank you for all your prayers and support! will update soon!

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