Welcome to B.Strong

Bryce at Grandpa and Grandma HeckendorfsB.Strong was created for Bryce Thomas Heckendorf and stands for Bryce Strong. At just six and half months old, Bryce was diagnosed with Krabbe Disease, and since then has endured more challenges than most of us will face in our entire lifetimes. Despite numerous hospital visits, tests, and new challenges every day, Baby Bryce constantly amazes us all with his strength and endurance. For such a small person, he has inspired so many people. We all want and need Bryce’s strength instilled in our everyday lives.

Whether or not you have the wonderful fortune of knowing Bryce or his parents, Kyle and Jenna, there are circumstances in each of our lives when we need to call upon a little more strength. We want to inspire you with Bryce’s strength — our B. Strong — and encourage you to find the inner strength that’s within each and everyone one of you. That’s why we made the B.Strong bands: They’re an outward symbol of our intention to B.Strong in the face of adversity and life’s unexpected challenges (see right for details on how you can get your own).

 The shark in the B.Strong logo represents Bryce’s favorite animal. Since Bryce’s diagnosis, Bryce’s family has found strength and comfort in reading his favorite book, Commotion in the Ocean by Giles Andreae and David Wojtowycz. Bryce lights up when they come to the shark page. The superhero shield represents the superhero strength Bryce demonstrates every day.

The B. Strong Fund Mission:

  1. To provide Kyle, Jenna and Bryce with the financial support and means they need to be proactive about Bryce’s care. This will allow them to work with a functional medicine doctor who’s goal is to get Bryce’s little body back in balance (his liver proteins are much too high for an infant, his vitamin D level is too low, his cortisol too high, etc.). It will also allow them to travel to Pittsburg to meet with Dr. Maria Escolar, MD, who specializes in Krabbe, both in terms of treatment and research. We want them to have every resource at their fingertips without concerns about the price tag or related expenses.
  2. To raise awareness about the importance of universal newborn screenings: Currently, only New York and Missouri test for Krabbe in the newborn screening panels. New Jersey will be added to this small list as of January 1, 2014. Detected at birth, this disease can be treated with cord blood or bone marrow transplants, and children can go on to live normal lives. We want to advocate for standardized testing on a national level, so fewer families are faced with this heartbreaking diagnosis.

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11 thoughts on “Welcome to B.Strong

    Ken Wibberley said:
    July 12, 2014 at 11:22 am

    HI
    We know what you are going through. Our grandson Levi was diagnosed a few monthe ago. He is only 1o months old and has just finished testing with Dr E at Pittsburgh. In fact he is still there at the moment.
    We are from Perth Western Australia. We dont have a website but levi has a facebook page at Levi;s Leukodostrophy Battle.
    Take care

      jamiekuen1 responded:
      July 18, 2014 at 11:33 am

      Hi Ken, Thank you for reaching out. We have been following Levi’s story on Facebook, and are sending prayers your family’s way as well. Together we will raise awareness of this terrible disease and advocate for newborn screening. Take care.

    Heather Bussan said:
    March 7, 2014 at 2:03 am

    Bryce is such a beautiful baby boy! We keep him in our prayers every day and night for a miracle of healing!
    Prayers also for his parents for strength. Passing around the message for prayer for your family. Will keep doing so. He is adorable! :)

    Jeri Kluesner said:
    February 9, 2014 at 3:06 pm

    May God be with you every step of the way. You have a very cute little angel.

    Chip Vaughn said:
    January 23, 2014 at 4:16 am

    The Vaughns send up prayers for the Heckendorf family.

    Jan Wetzel said:
    January 10, 2014 at 11:24 pm

    Our prayers are with you all. little Bryce looks just like his daddy did when I took care of him as a baby. All are hopes are for the best for this little guy and his family.
    The Wetzel family
    Bruce and Jan Holly and Eric

    Joan Kutz said:
    January 2, 2014 at 4:51 pm

    Jamie,
    Please let the event organizers know that I am available to help in any way needed.
    Joan Kutz

      jamiekuen1 responded:
      January 3, 2014 at 9:36 pm

      I will do that! Thanks so much, Joan :)

    Joe Krantz said:
    December 28, 2013 at 10:08 pm

    I would like to help at the youth and ag in any way possible. Please don’t hesitate to contact me 608-732-2269

      jamiekuen1 responded:
      December 29, 2013 at 2:37 am

      Thanks, Joe! I’ll let the event organizers know and they’ll be in touch. Take care!

    A. Barber said:
    December 28, 2013 at 5:35 am

    The TARHEEL family is pulling for Bryce!

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