Jeryn’s Story

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On November 11, 2005 my 11 month old son was diagnosed with severe Hemophilia A. We began infusing him with factor VIII for bleeds. Within 4 months, we began to notice the factor was not healing him as quickly. It was around then that we found out about his inhibitor. After lengthy discussion with his doctors we made the decision to try to fight it off. Jeryn was so young that his best option was to place a port-a-cath in his chest for the daily infusions. He was to be given a very large dose of factor VIII every day, aka Immune Tolerance Induction, for as long as it took.

At this point, all we could do was be afraid for our son. We had, within a six month period, found out our son had a bleeding disorder, the medicine to control the bleeds did not work, and he would have to have surgery if he was to have any chance of beating it. Every doctor will assure you, and your family will console you but at the end of the day you will still be scared. That is ok, you have that right.

Over the next 3 years Jeryn would successfully fend off the inhibitor 4 times.  Each time it would come back without warning and stronger than it was previously.  It is currently August 2009 and his inhibitor level has been 0 since January.  From this point on every day brings the possibility that it may return but also the hope that it will not.

It is important to note that our doctor is one of the best in the world and he told us that if we did not beat it within 18 months the chances we would beat it at all were very low.  Forty-four months later my son is still fighting and still winning small battles.  Throughout this ordeal my wife and I have learned many valuable lessons, the most important being never give up, never quit!

In the beginning you will feel confused, scared, and fearful that you can’t handle having this placed in your hands.  The Bible says that God will never put more on you than you can handle.  You will learn that you have more nerve, ambition, and heart than you ever knew you had.  While it is truly sad that a child must bear this disorder, in the long run, he will be a better, stronger person for it.

19 Responses to “Jeryn’s Story”

  1. I really like this…You guys have tremendous strength and character the way you have stayed postive and continued to fight… Jeryn is a blessing in every way and he has grown into such a handsome little boy, and ALL boy at that! LOL He is a very lucky little boy to have parents like you guys. We love you very much and continue to pray for you all everyday! We are always here for you guys because that’s what FAMILY is for! =)

  2. I am the very proud momma of this sweet little boy. First I want to start by thanking Andy Tag for doing this..It really means alot. I also want to update everyone..At this moment Jeryn is still doing well, although he is bruising so much more and the last level came back at “0” but the recovery levels were not good. This means the inhibitor IS infact back, just not a measurable amount. So, we have just recently called and are in the process of “getting a second opinion” and we are going to try a different route. Just please keep him in your thoughts and prayers..

  3. god will never put more on you, than you can handle…..WITH HIS HELP………. I LOVE YA’ll

  4. we all love our Jeryn and will stand behind all that has to be done for him…he is a joy to be round and full of love and crazy like a normal kid ……so let all know that life is great and battles can be won…… GOD does do thing in his own time

  5. KRYSTAL AND BRIAN WE HAVE BEEN PRAYING FOR JERYN EVERYDAY SINCE WE FOUND OUT ABOUT HIS PROBLEM. HANG IN THERE AND THE GOOD LORD WILL TAKE CARE OF IT. LOVE YOU BOTH, AND BOTH OF THE GREAT GRANDBABIES.

  6. I’m glad you could get your story out there. It’s awesome that you are sharing your story with others to help them out and give them faith and hope. You guys are strong and couragious. You are always in my thoughts and prayers. May God bless your family always. I love yall always!

  7. I am so proud of you guys for sharing your story with others. Not only are you incredibly brave and strong, but you’ve kept your faith trough it all. I’m so proud of Jeryn’s strength through this struggle as well. He has been so brave throughout this as well. He is and will be an inspiration to so many children. Your family’s power to not give up is awesome. Keep hanging in there, God will get you through this. He has a plan for you all. I love you all, you will always be in my thoughts and prayers.

  8. Wendy Lynn:)(the aunt)

    Sunday, 25th October 2009 at 2:12 pm
     

    This little guy is my inspiration:) He has ALL of these problems yet goes on like a normal kid. Well MORE than a normal kid!! He is extremely active.He is the strongest kid i know. And one of my main heroes(: My sister and brother-in-law are two of the strongest people i know. I look up to them for being able to do all of this plus some. I love them all with all of my heart!!<3

    -Wendy

  9. Jenifer Williams aka NANA

    Monday, 26th October 2009 at 10:14 pm
     

    Jeryn is not just my grandson but he is also my hero. He is a fighter. We will never give up hope of finding a cure. And untill we do we will not give up we will not quit. And Krystal and Brian are my heroes as well Jeryn is very lucky to have you as parents. And I know you will never give up and never quit looking and searching for answers. Your in my prayers always. I LOVE YOU

  10. Jenifer Williams aka NANA

    Monday, 26th October 2009 at 10:24 pm
     

    Jeryn is not only my grandson but he is also my hero. He is a fighter. He will never give up and he will never quit. I have faith that one day a cure will be discovered. And Krystal and Brian you are also my heroes. Jeryn is very fortunate to have you as parents. Because like Jeryn you are also fighters that will never give up and never quit. You are always in my prayers. I LOVE YOU

  11. Thank you for sharing. My son Ben is just starting on the high tither inhibitor journey, and it is enouraging to hear that you guys are able to hang in there.

  12. DD..how old is your son? We will keep you all in our thoughts and prayers!

  13. I love you jeryn kade!!!

  14. Hi- I saw Jeryn’s story & wanted to let you know, we too understand about inhibitors being at unmeasurable zero but still having cruddy recoveries. My little guy, Connor and his older twin Tyin were both discovered to have inhibitors at about 6 months old- at 11 months old we had central ports placed and factor dosing commenced daily. After about 8 months of daily dosing, our inhibitor levels were unmeasurable but the recovery wasn’t good– eventually, Tyin’s levels went to mostly normal and while the doctor’s consider him a success, our HTC nurse & primary Hematologist know that we consider him to be In Remission– we know it could come back, but we hope for the best and right now it is working fine.
    Connor on the other hand had a “Zero” level for nearly a year and then Popped back up with a 2, then a 7 then topped out at just above a 13… we were still doing daily doses of 2000 units of Advate on a 25lb kid (he is turning 4 in a couple weeks & has just topped 28 lbs) and he’d have it down to near nothing in 45 minutes. We switched to alphanate. (I told that story on MBB if you want to read it.) and dispite the fear and misgivings & such, it seems to be working for him. His recovery levels have been getting better though it is a roller coaster- and although his inhibitor is staying, it is right now under 5 at last levels in October… I don’t know what you have thought to try, but I can say that Plasma Derived factor seems to be doing the trick in our case & if you have questions- do feel free to email & chat.
    Good Luck!!
    I’d love to swap tricks & suggestions!
    Carri, BruiserMommy to Tyin & Connor

    ps- the website above is not updated regularly but does have some of our story.

  15. I know every Hemophiliacs journey is different. My son is factor 8 severe. We have had our road blocks in our journey but nothing like Jeryn’s. After reading your story as a mother my heart goes out to your family. My family told me that all mother’s are mama bears but Hemophilia mother’s are lionesses ! Thanks for sharing and keep up the fight !

  16. New update on Jeryn..His inhibitor titer is 64 at this time, which is not good. We are going Tuesday Jan 19 for Rituximab. I understand that after this first dose Jeryn will then start taking Alphanate daily. Just keep him in your thoughts and prayers..Thank you all!

  17. Thanks for posting your story! I have a 2 mth old little boy with the same thing(hemophilia type a severe) we found out about one month after he was born so we are just coming to grips with everything. Reading blogs like this help me understand that we are not alone.

    Praying for Jeryn!

  18. if anyone out there has a newborn with hemophilia plz email me i would love to chit chat about this disorder!

  19. When I read stories like this I get so much hope. I have a lil boy tanner who is 2 he has had and inhibitor since he was 8 months old. After many different products we found out he is highly allergic to all recombinant products so we had to switch to plasma which didn’t help either so now we are trying plasma with Von willebrand and it seems to be working are inhibitor has gone from 850 to 140 which is still very high and every day is a battle but all we can do is stay positive and watch him live life as a happy lil boy who let’s nothing stop him. And wish that one day we will see single digit numbers that eventually will bring us to zero..


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