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Empowering Emalin

$7,065raised of $10,000 goal
70%

Organizer: Scott & Taunya Harader Beneficiary: Emalin Harader

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Fundraiser Details

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!

 

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Updates

Updates

01/02/2014
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! !
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01/02/2014
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! !
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12/31/2013
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
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12/25/2013
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
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12/13/2013
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!


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12/12/2013
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!!!
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12/12/2013
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!

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12/11/2013
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!


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12/10/2013
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.
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12/09/2013
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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12/05/2013
by Scott & Taunya Harader
Well last night Emalin sent us all for a scare her temp was 100.3...but praise God so far this morning it is 99.7 (still a little high and we will monitor it really close today) but it is headed in the right direction!!!!! thank you for all your prayers and continued ones!!! your support has been so overwhelming and we have no words for the outpour of love! God bless you today as you continue to share, like and dontate if you can!!!
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12/05/2013
by Scott & Taunya Harader
Well last night Emalin sent us all for a scare her temp was 100.3...but praise God so far this morning it is 99.7 (still a little high and we will monitor it really close today) but it is headed in the right direction!!!!! thank you for all your prayers and continued ones!!! your support has been so overwhelming and we have no words for the outpour of love! God bless you today as you continue to share, like and dontate if you can!!!
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12/03/2013
by Scott & Taunya Harader
So we went to the doctor yeterday. we arrived home very late so sorry it has taken till today to post.
Dr. Radhakrishnan said that we have exhausted all other options and transplant is all that is left. we are happy to have a plan but very saddened with the statistics. there is only about a 30% chance that Emalin will see her 5th birthday (without transplant), and with transplant 57% chance she will live for 10 years post transplant. however medical technology is evolving and we seve an AMAZING GOD!! and I know that HE has a plan.....This is also going to require her to be in the hospital for 8-12 months and she will go to the operating room every other day for the first two months to make sure that her body is not rejecting the organs.
Our plans for the next 3 years are now on hold. At this point the next several months will be filled with head to toe testing, and they will conviene the board of eithics, then at that point her case will be submitted to UNOS (the national transplant registry) and once they accept her the average waitning time is usually 187 days. untill that time she needs to remain infection free so that we will have enough lines left to do the surgery. At the point and time that she is accepted to UNOS we will wait for the call. when we drop everything and go.

We will continue to keep all of you updated on any information that becomes available, we thank you for your support. As we have stated before due to politics with the insurance companies, the nursing services that are covered are lpn's who do not legally have the ablitly to do any of Emalins nutrition or medications (due to the fact they're all delivered iv) so this leaves Scott and I legally resposible to do these things. Since he is working 12 plus hours out of the day pending any emergencies, I am unable to work outside our home. This obivously creates finacial challanges especially with the added medical expenses and long stays away from home. So again we thank you beyond words for your love and support that you have shown us and continue to show. we pray that God blesses you!!!
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12/02/2013
by Scott & Taunya Harader
First wek hope and pray everyones Thanksgiving was a blessed one!! We had a very quiet day, and realxed the three of us!! Josiah made it home Sunday afternoon....we were all super super excited!!!
Emalin is stable at the moment, and praying she will make it though the Christmas season at home. (this will be her first christmas at home) again super excited!! Today however we go see Dr. Radhakrishnan for our "really big" appointment...hopefully this afternoon we will have more info for you!! :-)

we thank you again for all your shares and donations it is appreciated beyond words!...more pots to come soon!!
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11/24/2013
by Scott & Taunya Harader
Prayers still/again needed Emalin has been running so low grade fevers again she is less than 1/2 degree from being admitted into the hospital. (Fever for her can be life threatening, for those of you who maybe new to our site.) so we ask for your continued prayers. 
We would love for our friends and family & even those we may never had the oppertunity of meeting who have been supporting, praying & following Emalins Journey to PLEASE continue to pray, share, like and for those of you who are able support. we Do not want to loose momentum with spreading the word. we thank you all who have taken the time to contribute. and sharing in this with our family. We love you all!!!
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11/22/2013
by Scott & Taunya Harader
Today Emalin has had a somewhat peaceful day, we have been dealing with some night terrors, and still overcoming not having any nursing staff. so some of the procedures have been "quite the challlange" as Daddy is still putting in very long hours at work.

After lots of calls and emails, we have confirmed 2 of her 4 appointments this comming monday and the following monday. still waiting on 2 more. so the next few weeks are going to be busy ones. praying and hoping that we will be able to remain at home for the holidays even though we dont have alot planned.
We would like to thank those of you who have helped meet some of the financial goals that have been "put out there" as Daddy is working as much as he can when he can but still needs to be present during the "big" stuff! We appreciate all new supporters and those of you who are helping in other ways like spreading the word and likeing her page. please don't give up on us yet!!!! :-) we are getting there!

God bless you all!
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11/21/2013
by Scott & Taunya Harader
Today has been our first day at home so I apologize for not having updated sooner. Thanks to a friend who came by this morning to help with emalins cathiterization and the nursing superviors visit we have been so far able to accomplish the 2 out of 3 so far today.
Last night at 11:30 pm Daddy recieved a phone call that he needed to be into work early so he left about 9:00 am and will be home tonight about 11:00pm. so Mommy and Emi have been plugging along trying to accoplish many things. :-) so Far we have remained fever free today and are just trying to settle into a little bit of a routine again.
Still praying for the nursing situation as we still do not have ANY nurses (and that makes for some difficulties), and also waiting on appointment times from 3 of the physcians that we need to see in the next 2 weeks.
Big brother is doing ok (missing home) but having fun with Nana & Papa in florida, looking forward to seeing some of his friends and our family while there.

We once again would like to thank all of you for your our pour of love and support to our family and Emalin during this Journey it is proving to be an ongoing and long one! :-) as always that is a good thing menaing she is still here fighting the fight! thank you for all your continued help as there are still so many things that are needed.

For some of you who were inquiring, we need to purchase a "treatment table" for Emalin as she has truly out grown her changing table and that is where we have generally done all of her medications and procedures (this is used multipule times daily 10-15 at least). one of the other large purchases that need to be made is a hospital bed (crib style) she is starting to really "fill out her crib" but due to all the tubies and medical equipment that is in her room she is not ready to "graduate to a big girl bed" we need to remain in a crib style bed but a larger version. In addition the time lost from work (for daddy) and the VERY large fuel bills due to numerous trips to hospitals and Doctor visits. as well as food and general added expensis that come from spending 73 weeks away from home. I hope that this helps and we are able to answer questions that some of you have had.

As stated before, we thank all of you who care, who have supported us and are following this Journey with you and I hope that in some small way Emalin is able to touch your heart! God bless you!
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11/20/2013
by Scott & Taunya Harader
We arrived home safely.  Just finished all emalins meds and cathing. She is sleeping soundly in her own bed. Mommy &daddy are whooped. :) but blessed to be home. Missing big brother tons (who is in Florida visiting nana and papa). Going to get some sleep before we "get back at it" again tomrrow. So many appointments and meetings this week praying all goes well. Your support is beyond words and appreciated in the deepest parts of our hearts!!! We pray that all of you will be blessed beyond comprehesion!!!! Thank you for your continued love prayers and donations to Emalin and all that furthering her medical needs entails.  Good night for now...may you rest peacefully!!! 
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11/20/2013
by Scott & Taunya Harader
Emalin had a good night remained fever free by the skin of her teeth lol so we are GOING HOME!!!!! big HUGE yayya!!! So very excited. Daddy arrived about 2:30 in the morning after work and we are packing up to head out we will be leaving around 12:00 should be home (hopefully) by about 5:00 pm. 
Emalin will have several appointments in cleveland in the next two weeks for gi, endo, and gentics. We thank you for your continued support and prayers will keep you informed. Another huge matter of prayer is that our only nurse employed quit during this hospitalization. We have REALLY struggled to find good and consistant nursing staff to help with the many procedures Emalin requires daily.  She is defently a two person job! :) 
Again thank you for your continued prayers and support. It means more than words can say!!!
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11/19/2013
by Scott & Taunya Harader
Emalin made it out of surgery.  Her line was successfully placed.  And as long as she is fever free  in the next 24-48 hours we will be able to go home. We will follow up with De. Radhakrishnan within two weeks. Will keep updating asb info is available. ..thank you again for all the shares on/from the empwering emalin fb page. And all of the support that we have recieved. May God bless you 10 fold!!!!
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11/18/2013
by Scott & Taunya Harader
Today was an emotionally challenging day. as previously stated Daddy had to leave and go back home (to work), and we are preparing for surgery tomorrow. Furthermore there have been alot of "big decisions" in the works:
After MUCH prayer, (looking for direction with all of the new information that we have been given) our previous physician Dr. Radhakrishnan of the Cleveland clinic phoned us asking how things were going with Emalin and all the "new happenings". After lengthy discussion with both he and the current physician they together feel that Emalin will be "best suited" returning to the care of Dr. Radhakrishnan where 99% of her surgeries have been preformed and the Doctors there know her anatomy and the things that have been done. We feel that this was truly a "God thing" in all the timing and support that has been offered by both institutions together.
At this point we "officially" have 5 places left in Emalins body for the placement of her central lines. (normally there is 12) however due to the bacteria that is rapidly over growing in her non functional intestial tract it keeps infecting the lines and then they require removal/replacement. If we are unable to get her on some sort of feeding regimen through one of her multiple "tubies" she will need to move forward with a multi Visceral transplant (which is her intestinal tract her pancreas and her liver possibly the stomach). For this Major surgery she will need three available central line spots. So we have been told that any other intervention prior to transplant will have to be in the time frame of the next two lines.
An intestinal and multi Visceral transplant come with MUCH risk, there is a 53% chance of survival post transplant and it requires an inpatient stay of 8 plus months.
Inspite of all these very sad and challenging obstacles Emalin faces she is a VERY happy little girl she is aware of all that is going on, and in spite of having to follow a very strict medication, tpn (iv nutrition) and catheterization schedule. she has adapted she "helps" with all of he procedures and medications and "yells " at you if you do not "do it right". :-) She is so very very resilient and will make anyone she comes in contact with smile. I do not say this a a cleshay, she teaches me (amongst other people) something every day just in her attitude and her very understanding spirit. We are blessed beyond words to call her ours.
We can never say enough thank you's to "repay" all of you who have expressed financial support, prayers, and just general love and kindness to our family and especially our Emalin during this time. We thank you for the continued support and prayers and ask God to bless you abundantly in return.....more updates to come!!!!

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11/17/2013
by Scott & Taunya Harader
Today has been a day of rest (as much as it can be) the multiple daily straight catherizations are starting to go a little better than they have been. And Mommy is offically "got the hang of it...it is a lil tricky lol) low grade temps are at bay today (thank God) ....and on a more interesting note thw hospital is under severe weather watch and tornado warnings so they are dicussing pulling all the patients into the halls and away from windows so that should make for an interesting night. Daddy has to head back to work tomorrow so depending on weather he will leave tonight or really early in the morning. Again thank you to all our supporters we as a family pray  you will be blessed beyond measure for your acts of kindness. 
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11/16/2013
by Scott & Taunya Harader
Emalin Recieved anoth blood transfusion last night. We have still been unabke to locate the scource of the bleeding. :( so watching her blood levels (and how pale she becomes, along with heart rate and o2 stats) will be very important.Thankfully all went ok with it. She is running low grade fevers again so doctors aee just keeping a careful watch. As of right now she is on the schedule to go back to the operating room Tuesday for a new central line.  Thankn you again for all of you who have supported us in various ways.  We can not express our gratitude. .love from all the Haraders.
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11/15/2013
by Scott & Taunya Harader
I am sorry that I have not posted an update sooner things have been crazy.
Emalin is MRSA free thank God so like stated earlier in the week we will eventually bring her home hopefully for the holidays. However addtional testing has shown that her central access is very limited she has 5 remaining veins and 3 of them will be necessary if we move toward transplant. so we basically have the time the other 2 veins last to formulate a plan. for those of you who may not know , Emalin is completely dependant on Iv nutrition (TPN) for sustaining life.
They did try the Blenderized diet and it did not work. :( so Doctors are currently dicussing and going to speak with us later regarding any options that are left prior to transplant.
we thank you again for the continues love support and most of all prayes!!!!
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