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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.  

Latest Journal Update


Eddie had a rough night trying to get comfortable and dealing with the pain.

However he continued to be brave and strong.

We should see Dr. Mackenzie this morning and find out the plan for Eddie's stay and our return.

This morning I told Eddie how proud I am of how he is showing such strength and maturity. He said he is doing it for his school. "They do so much for me and always support me I am going to be strong for them." So true. He wants to get back to school ASAP.

Thanks for all the prayers and well wishes. Things have gone smoothly so far. Keep them coming for a speedy recovery with as little pain as possible.

Thank you all!!!
2 people hearted this



Mary Nehrling
Thinking of you, Eddie! You were a great little kid and it sounds like you're an equally great big kid! You have wisdom, power, and insight beyond your years. I know this because of your statement to be strong for all of your supporters at school! Thinking of others ... You know where to put your energies and focus to help you heal and chuck-off the pain. You are an amazing guy! Praying you and your family have a very blessed, joyous Christmas! Mrs. Mary :)
1 person hearted this
teri michel
By The Michels
Hi Eddie! So glad to hear your surgery went well. Hope your feeling better soon!
Pat Fiene
By Pat Fiene
Um, Eddie, as you read the post I sent earlier this morning, you will quickly realize that I spelled Favre's name wrong. Oops,how embarrassing... Hope you're feeling better this morning, buddy.
Kathy Craig
By Kathy Craig
Keep up the strength Eddie! Hope the pain improves quickly.
Pat Fiene
By Pat Fiene
Hi Eddie! Hopefully you're sound asleep now after a kinda rough night, but when you wake up be sure to have Mom or Dad make plans for you to watch that Packer game tomorrow night...I assume it will be nationally televised, but if not, one of your friends needs to record it for you! Besides beating the Bears, Farve's #4 will be retired...but I'm pretty sure you know that! You and Farve have lots in common, chief among them, playing in pain, Hang in there, Eddie. Tell Mom that her students and I completely demolished her classrooms at both schools so she'll have something to do when she gets back.
Debra Gerum
By Deb Gerum
Eddie, you are an inspiration to us! Such a brave young man. Praying your pain will lessen and your rehab goes smoothly.