Justin Essex Justin's Journey

First post: 1/25/2017 Latest post: 3/9/2017
Welcome to our CaringBridge website.   We are using it to keep family and friends updated in one place.  In order to receive updates as we post them you will need to click "follow site" button.   Justin was born with a rare bone disease called Hypophosphatasia.  He was diagnosed at age 3 months which put him in the infantile diagnosis.  Only 30% of these babies survive the 1st year of life.  There were many days when we wondered if we would see his 1st birthday.  Justin just celebrated his 14th birthday with many medical stories behind him and some major ones just ahead.  HPP (Hypophosphatasia) causes brittle bones and many other problems including brain, muscles, lungs and kidney issues.  Justin has been in a wheelchair since he was very small.   For 1 year Justin has been on a new medication approved by the FDA last fall.  Basically, it replaces the enzyme he is missing to strengthen his bones.  It is working well to strengthen his bones however, he still has deformity in his legs, ankles and feet which is preventing him from walking without assistive devices and a lot of pain.  We recently met with an Orthopedic surgeon at Shriner's hospital in St. Louis for evaluation to see if Justin is a candidate for surgery to correct the mobility issues.    He is scheduled for surgery on both legs March 8th.  They will cut through the Fibula and Tibia and take a wedge of bone out of the Fibula.  Then adjust the ankles and feet to the correct position and reattach everything (sounds barbaric, we know!).  The surgeon advised us this will be major surgery and it won't be an easy recovery.   Justin made the ultimate decision and said he is excited but terrified at the same time.  We appreciate the prayers and support by our friends and family.  Although a tough journey, we believe the end result will be the freedom to walk like other kids.

(Under the "Ways to Help" tab above there is a link with with information about Hypophosphatasia and a GoFundMe site was set up for Justin as well.)


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