Patient of the Month- Jaycob B.

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Jaycob B.

Age 8 

At around 8 weeks old, we embarked on a challenging journey to get a diagnosis. We did not know anything was wrong. When we discovered he was failing to thrive and had symmetrical leg fractures, it prompted an abuse investigation. He was placed in foster care. After 18 months of fighting for custody, we got an official HPP diagnosis and got Jaycob back.

We wish there was more knowledge about HPP, especially among medical professionals. We kept getting the runaround. They stated that if he had this type of bone disease, he wouldn’t look normal. That was devastating to hear constantly. However, after genetics and the aid of Soft Bones, things started to settle down. We could heal from lost time and learn more about HPP. 

Jaycob is now giving himself shots in his belly and legs. He is currently in the Stick it to HPP program at Soft Bones, which recognizes his efforts on his self-injection journey. He recently hit another milestone! Jaycob is also an active member of the Hippo Squad. He loves the interactive box sent each quarter and looks forward to each activity. 

We will finally be attending the National Patient Meeting in July. Jaycob is super excited to meet other kids who have HPP. He feels his friends understand and care, but they don’t truly understand how he feels. 

All about Jaycob —

Jaycob is 8 years old.

He is a ball of joy and sunshine who has so much perseverance. Jaycob doesn’t let HPP get in the way of what he wants to accomplish, even when he’s in pain. He loves his family and friends and hamster Nacho.

  1. His Hero and inspiration is GOD – he knows God loves him unconditionally and more than anything.

  2. He loves to play soccer. Even when he is hurt, he will be on the field kicking the ball around or blocking goals.

  3. One thing he doesn’t like about HPP are the shots and when his dosage increases. He also does not like the leg pain as it makes him tired and unable to walk at times.

  4. He wants everyone to know that HPP hurts and wishes more people knew about HPP including doctors.

  5. He wants to share with everyone that the shots hurt and sometimes they bleed a lot.

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