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

Today marks FOUR weeks since Cooper’s surgery.  It’s all so surreal.  I’ve got this 6 year old boy running around the house, playing games, playing outside and arguing with his sister - seems exactly like any other 6 year old on summer break, but Cooper’s wearing a neck brace.  He’s adjusted spectacularly to the neck brace.  Occasionally the stitches on the back of his neck itch, and we take the brace off to put a cool washcloth on the back of his neck.  He rarely complains about his hip, where they took the bone to graft to his vertebrae.  He often complained of headaches, but that’s lessening as well.  It’s just such a blessing to be home, and have life back to “normal”.  And just like “normal” we are back to weekly infusions, play dates, and we’ve even planned a trip this summer!  For FUN!!  Since Cooper isn’t in the body cast we were anticipating, we’ll take advantage of airline travel being easy and visit family in the Pacific Northwest next month.  
Cooper hasn’t been as self-concision about the neck brace since we’ve been home, so we’ve been out and about a bit.  He was excited to play mini-golf with Papa and Grandma last weekend.
Cooper will have Xrays of his neck once a month, starting today, until the beginning of September.  We’ll send the Xrays back to Dr. Mackenzie at Nemours to review.  We think he’ll only need 3 months total in the neck brace. 
That’s all that’s new from here.  This recovery seems to be pretty easy?!?!
Thank you for your thoughts and prayers.  Our current prayers are for flawless healing as expected and continued recovery.
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