Sad day for Benjamin Family

[MARCIA AGUALLO BAKER]

First I cannot thank all of you enough for all you have done. You have not only helped me but now are helping my mom through this difficult time. She finally was able to post something on the site and all she kept saying was how wonderful you guys are. I am not sure where to start on all the news. First thing is Ben did make it through the heart catherization. His heart is still functioning at around 7%. We were hoping to find the cause but it told us not only was it not bacterial but it is caused by the Atypical HUS that has been quite. Explained to my brother what you all said that even though it is showing it is quite it is still doing its damage. They increased the heart medication that is only given IV and is so strong he cannot be on it very long. Unfortunately, not only has his heart not gotten any better, the blood work today confirmed that the atypical HUS is now becoming active again. This has been so devistated. He continues to lose weight is only 44 lbs at 6 years old. My 19 month old son weights 30. We had a 8 hour period where the doctors told us that they were on standby for him to go into cardiac arrest. I have never been so sick in all my life waiting to see what was going to happen. His blood pressure finally started going back up and his heart started to fight again. Bloodwork this morning confirmed that the atypical HUS is once again active and he had to start the plasma pherisis treatment. The concern with the doctors is that they don't know how the heart will respond to the treatments because they have never had anyone in heart failure get these treatments. they even told my brother that they really just don't know what to do. That has not been very encouraging for the family. It looks like if his heart doesn't improve soon, he will be put on the heart transplant list. They have really had some serious discussions with God and said they are accepting the fact that Ben may not make it. They just want him to stop suffering. That has been so hard for them. My son has been very sick the past 10 months and when he went for his 19 month checkup, they want him to have some immune testing performed. It seems like his immune system is not working. He has been on 13 rounds of antibiotics in 10 months and been in hospital 3 times for croup and breathing treatments due to asthma. My brother made me promise that I would have a workup done for the Atypical HUS. He said please don't wait like I did. He was suppose to get the names of the test that need to be ordered but he is so overwhelmed he hasn't had a chance to do that. Ben's genetic testing has still not come back and Josh's pediatrician told us to go ahead with the testing. If anyone could give me the names of the test for this I would so appreciate it. Any other information that you have regarding Ben would be helpful also. Thanks again for being here for all of us.

[Svetlana Finley]

Thanks for update, we been praying for Ben. I am so sorry that he is not better yet, we will continue praying and believe that it will turn in right direction and God will give doctors wisdom what and how needs to be done for his healing.

[Grace]

I am praying for strength and healing for Benjamin and the whole family. I am sorry to hear your son has been sick, too. The genetic testing takes months to see results, but there are other tests with more rapid turnaround. In addition to the regular CBC and chemistry panels, there are complement level tests like CH50 (total complement), and C3; these can be low in aHUS due to increased consumption & removal from circulation. Haptoglobin is another protein that is low in hemolysis. High LDH is another indicator.

[Cheryl Biermann]

As Linda posted,

please contact the doctors on the Doc to Doc registry, they may have some insight on how to handle the transplant/infusion issues. Please know that we are here, and I have also lost a child, not from this disease but to a car accident when he was nine, he would now be 23. So please if you need anyone to talk, there are many of us who would talk via phone as well. I'll light another candle to remind us to continue to pray for Ben. Your family is wise to prepare for the worst, but to keep praying for the best.

[Kerri Grey]

Hi Marcia, I have been following Ben's journey from your posts and i am so sad for you all. You are going through such a devastating period in your lives. I pray and hope that one day you will have a happy ending and all this pain you are going through will end. Ben and your family are constantly in or thoughts and prayers - stay strong and always remember that people are here that care.

[lisa ann peterson]

the only advice i can give is pray and when you think god isnt listning he is... iam so sorry to hear of your news about lil ben..i know that these kids are fighters and that miracles can happen my daughter is proof of that.. when they thought that she would have a heart attack because her heart was beating 200 beats a min and her blood pressure was 200/100 she fought it... i want you to know that even though we dont know you or ben but my lil girl every night asks god to get ben healthy.. she knows he is sick like her and she says that she wants god to make ben better.. i am teary eyed reading your blog and we will continue to talk to god and pray for ben and for his family because you all need strength..god bless and we all walk with you in this journey

[Linda Burke]

I'm so sorry to hear of all that your family has gone through, and continues to go through, as Benjamin continues to struggle with such overwhelming health concerns on both the aHUS and heart fronts. On the Home Page of this website is the 'Doc to Doc Registry", free consults offered to Ben and Josh's physicians by other doctors experienced with aHUS. Ben's doctors can contact Dr. Patrick Brophy of the University of Iowa - he's an outstanding doctor who has treated several aHUS patients and may be able to shed some light on the heart issues. Josh's pediatrician (and you, too) can click on the Genetic Testing link noted on the Home Page. It will give you specific info for how to proceed with genetic testing for Josh at the University of Iowa, a specialist in genetic screening for aHUS patients.
Ben and your whole family will be in my thoughts and prayers..... God bless you all!