Jocelyn Goldbach LuluRain

First post: Jan 5, 2020 Latest post: Feb 27, 2020
Jocelyn has a rare genetic bone disorder called Multiple Hereditary Exostoses (“MHE”) in which benign, cartilage capped tumors (exostoses or osteochondromas) grow from the growth plate of long bones or from the surface of flat bones throughout the body. These bone spurs can cause numerous problems as they can catch on muscles, damage nerves, prevent bones from growing properly, cause bowed arms, legs, general fatigue, soreness, etc..  and the only treatment at this point is surgery to remove the "bumps" when they prevent her from growing normally or cause too much pain. Children inherit MHE from their parents, but in 10% of cases the genetic mutation is spontaneous. Jocelyn is one of those rare unicorns. 

We discovered Jocelyn's "bumpy bones" when she was 4 years old in 2015, but we haven't really shared her story with very many people. Only her family and the ones who do life with her regularly (teachers, church staff, her friend's parents) know about it, in case she needs to modify an activity or rest.  As she is getting older, she's understanding more and more the struggles of this disease. She is also opening up and willing to share her story with others! But she also understands she's not alone; we live in a fallen world and everyone has to deal with something as a result of the fall! 

We don't want her to be defined by this disease, so we've kept this part of her life off of social media. God allows trials and struggles in his sovereignty, for His purpose, and we believe what the Bible says: she is fearfully and wonderfully made! She is creative, kind, smart, musical, artistic, a gifted story-teller, a wonderful granddaughter, daughter, niece, sister, neighbor and friend! She has also given her life to Jesus and is growing in the Lord every day.

As her first major surgery was scheduled for January of this year, we decided to start this CaringBridge site to help our friends and family know how to pray and support her and our family.  Even though this is her journey, it really affects our whole family and we covet your prayers and support and couldn't walk this road very well without our amazing community!

Our family strongly believes in the power of community and the power of prayer. Thank you for walking this road with us as we write about Jocelyn's journey! We pray that her life brings glory to God and her story inspires others to seek Him to better love one another! 

CaringBridge is a nonprofit social network dedicated to helping family and friends communicate with and support loved ones during a health journey. Learn more about CaringBridge.

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