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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

Team Eddie Event and Updates

Team Eddie Event

 

Saturday October 11th, 2014, There will be afundraiser at the Pick N’ Save in Mukwonago from 10am-2pm.  They will be serving Saz’s foodJ, hot dogs, anddesserts.

We will also be selling the NEW Team Eddie T-Shirts.

 

Updates:

Since my last update – which was in FEBRUARY!!-many things have changed.

·     Eddie now gets his weekly 5 hour infusions at HOME!!!!  This has been a wonderful change for Eddie and the whole family.  This is the first year since the beginning of 2nd grade that Eddie will not miss at least a day a week of school!

·     We have had some exciting additions to Team Eddie – Aaron Rodgers, Bob Uecker and Joe Block!  I added pictures.

·     Last school year my Student Council at Section Elementary School raised a total of $2661.50 for the MPS Society!!  The students work endlessly to raise money in honor of Eddie. 

·     My Student Council at Big Bend,where Eddie is a representative, raised $2100.15 for Make-A-Wish. It was amazing to work to grant a child’s wish!

·     Eddie again got to announce an inning of a Brewer game with Bob Uecker and Joe Block.  He is a natural!

·     We had a wonderful summer with alot of time up north.  Not having totravel to Chicago weekly gave us so much more freedom.

·     Eddie is now in 5th grade and because of home infusions doesn’t miss a day.   We have no surgeries planned this year andif this is the case Eddie may not miss a day of school this year!

·     Eddie is a member of the Mukwonago Braves Baseball Team and the Mukwonago Bears Football Team.  Although he can’t participate in games, he loves hanging out with his friends and loves sports.  The coaches and organizations have made it possible for him to be a true part of the teams.

·     This year looks to be the easiest we have had when it comes to surgeries and infusions

·     This year has also proven to be quite difficult.  The differences between Eddie and his peers physically continue to become more prominent.  Recesses and hanging out with friends have become tricky situations.  Eddie wants to be a “normal” kid.  He wants to play football at recess with his buddies. When friends come over they want to run around and roughhouse –Eddie tries to keep up but can’t.  Emotionally Eddie is struggling with how different he is and it is sinking in that physically he will be limited in what he can do.  He is in daily pain.  Just walking, sitting and lying down takegreat effort.  He fights through all that pain to do what he wants to.  But watching him you can see him hurt. 

·     Eddie prays everyday for acure.  He just wants to not be in pain and play with his friends.  Knowing thathe will never go in remission, that this disease will continue to destroy his body daily even with the ERT, and that emotionally things will continue get worse for him as the differences between him and his friends widen breaks myheart.

Comments

3 Comments

susan napieralski
By Sue and Jim Nap
Eddie we think of you often, We pray for you that your pains goes away. hope to see you on Saturday. Thank mom for keeping us updated on you.. You are a strong young man. God Bless you all.
Amanda Tenwinkel
By The Tenwinkel Family
Hang in there, Eddie! We continue to keep you and your family in our prayers. I'm saying some extra prayers for pain relief or pain management, so you can play and participate more fully with your friends. Grateful to hear you are able to have the infusions at home and won't have to miss as much school this year.
Blessings and Well Wishes,
jo anne basting
By jo/jack
Hi Eddie and family, looking forward to seeing you and family on Saturdays fundraiser. Uncle Jack and Jo♥♥
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