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Eddie’s Story

Welcome to our CaringBridge site. It has been created to keep friends and family updated about Eddie. Eddie has been diagnosed with MPS IV or Morquio Syndrome.  Eddie is an outgoing fun loving 8 year old.  He loves the Packers and Brewers, spending time with friends and family, and playing baseball.  Eddie also has Morquio Syndrome.  Morquio Syndrome is a progressive disorder arresting growth and cousing severe bone disease in young children.  People with Morquio need extensive medical care throughout their lives.  At age 8 Eddie has had 8 surgeries and many medical complications.  These include a spinal decompression and fusion surgery which put Eddie in a halo for 3 months to heal, 8 plates screwed into the inside of his knees, a hernia repaired, moderate loss of hearing, decreased lung capacity, a mild heart murmur, and mostly the pain he goes through daily just walking and using his hands.  Currently Eddie is part of a clinical trail for an Enzyme Replacement Therapy.  We travel to Chicago every Thursday night so Eddie can start his infusion early Friday morning.  Eddie has just begun the extension part of this study.  This should last for another 4-5 years.  We recently found out that Eddie will need double hip reconstructive surgery and 8-plates inserted into his knees.  We will be traveling to Delaware to have Dr. Mackenzie perform the surgery.  Eddie will be in a spica cast for 6-8 weeks.  Then we will return to DE to have his cast removed and he will need intensive land and water therapy to be able to walk again.