Cooper’s Story

Site created on February 12, 2014

Welcome to Cooper's CaringBridge site.  I've created it to keep friends and family updated.  If you want to keep track of Cooper's journey, register on this site, set the notifications to get an email on journal updates, and then it will send you an email every time we update. This site makes it easy to get our information to you, but please don't feel like I don't have the time and energy for you.  Sign the guestbook here, or drop me an email, text or phone call.  It keeps me grounded. :-)

Cooper was diagnosed with Morquio Syndrome, type A (mucopolysaccharidosis (MPS), type IV A) on 30 Jan, 2014.  He was 16 months old at the time of diagnosis, and besides a bump on his back, you wouldn't know anything was wrong with the curious, ornery, quick to laugh, babbling toddler.

As an infant, I noticed a bump on his lower back.  We saw an Orthopedic specialist at Children's Hospital about it in June 2013.  He examined Cooper, took X Rays, and diagnosed it as kyphosis.  We were to do X Rays every 6 months and watch it.  We thought that he may need surgery to fix it, he may grow out of it, or he may just have a bump his whole life.  When we went again for X Rays in December 2013, our Orthopedic specialist was concerned that it had gotten worse, and wanted to order MRIs.  MRIs on a kiddo this young means they have to sedate him.  Not only were we concerned about him being sedated, but also about the unknown.  What could they find?  Cooper had MRIs on 13 Jan, 2014, and came out of sedation like a pro - sticking his tongue out, smiling and happy - yet wobbly.  Two days later we met with the Orthopedic specialist and first heard the term mucopolysaccharidosis.  We were told NOT to Google it.  It's scary, and the Internet had the worse case scenarios, right there at your fingertips for you to freak out about.  We didn't know what type, if that's what he had, or how severe - so take one step at a time and get into the Metabolic Clinic.  We met with the first metabolic doctor on 22 Jan 2014.  He agreed he thought it was one of two types of mucopolysaccharidosis.  But we were again told, don't Google it!  Cooper had more X Rays, a urine test and lab work done.  

We got an official diagnosis 30 Jan 2014 - MPS IV A, Morquio Syndrome.  The diagnosis was a double edged sword.   YAY!  We know what's wrong.  WOW, that's a lot to handle.  This is a great website that breaks it all down for you: http://www.morquiosity.com/  (http://www.morquiosity.com/ ) We have no prognosis for Cooper - we don't know how severe his condition may be.  We are thankful to have an accurate diagnosis at such a young age. 

We're now seeing all the specialists.  We are blessed to be in Colorado, where Children's Hospital is here help us through this.  

We are also lucky to have an Enzyme Replacement Therapy - which will help replace the enzyme that Cooper's body is missing.  It was approved by the FDA in February 2014.  We are writing the new standard of what Morquio looks like with medication.  But the therapy is a treatment, not a CURE.   Enzyme Replacement Therapy is a weekly infusion.  We spend 5.5 - 6 hours at the hospital on infusion days.  After seeing an array of reactions to the medication, Cooper now tolerates the medication well.  Cooper however does NOT tolerate accessing and deaccessing his mediport.  I pray this process gets easier as he grows to understand this is saving his life.

I got laid off after I had Cooper.  I switched to stay at home mom, now work part time from home for a software company, and volunteer as part of the National MPS Society's Board of Directors.  It's the perfect setting for our situation right now.  I know now why I got laid off.  It's God's plan to promote me to full time project engineer for Cooper.  I was a project engineer at my previous job - it was all about coordination, communication, documenting, lessons learned, etc.  

We are defining what normal looks like for the Tippett family, and I wouldn't have it any other way.  I love seeing the world through Cooper and his big sister Campbell's eyes.  It's all new, fun, amazing and sometimes scary.  But we're all in it together, taking one day, one appointment, at a time.  In the mean time, Cooper is busy playing baseball in the backyard with Campbell,  beating on his drums, and anticipating the next ski day or camping trip.  

I'm  fundraising to support research and find a CURE for MPS IVA.  Visit Cooper's Courage page to donate and check on our progress:  https://mpssociety.org/give/courage-pages/stories/cooper-tippett/  (https://mpssociety.org/give/courage-pages/stories/cooper-tippett/ )I'm a mom on a mission.

We are beyond grateful for the love, support and prayers of friends and family, keep 'em coming!!!  

Chris (Cooper's mommy)

Newest Update

Journal entry by Christine Tippett

For all the days that time stood still in June and July, they sure do seem to be flying by now.  Everyday Cooper has new tricks. First it started with standing by his walker to do “the floss”, then it turned to riding on a tricycle which quickly morphed into riding his regular 2-wheel bike again. Now he’s leaving the walker behind to shuffle himself around the house.  I love watching Cooper find his independence and confidence as he swims in the neighbor’s pool.  He’s playing drums, swinging the bat and shooting hockey pucks. He’s back to his funny, happy demeanor most of the time, and we couldn’t be happier. He started 3rd grade from the kitchen table, with the intention to join his classmates at school when he’s mobile again.  We are at physical therapy once a week, and he works hard knowing a Chic-fil-A drive thru could be on the way home! Coop is still doing infusion weekly. Infusion days go much faster when you are busy with school most of the day!  Last week we decided Cooper could try school for Thursday morning.  When I saw my phone ring from his special ed teacher at 11am, my heart stopped.  But then it pounded out of my chest when she said that Coop was having a great day, and wanted to know if he could stay the rest of the day! Now we can’t keep him away from school.  He uses his walker in the classroom and his Strider bike for recess and back and forth to the car.  He is full of joy and excitement both at drop off and pick up.  It feels so good to be back to a bit of normal in more ways than one.  Thank you for all the support through the past few months. We are very thankful to be on this side of surgery and recovery. 

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