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

We kept up with periodic Xrays and Cooper wearing the neck brace until FEBRUARY.  (As a reminder, Cooper had surprise spinal decompression surgery in June 2019).  For the last few months in the brace, the neck brace was for “high risk” activities only, so he could sleep and do school work without it.  Unfortunately, that meant some days he got on the bus and all the way to school without the brace, because we had lost it in the house somewhere in the previous 12 hours.  But it was always found again and brought to school before recess!

The other wonderful thing that happened in February is that Cooper was matched with Velocity, a Skilled Companion service dog from Canine Companions for Independence!  She is just the sweetest.  She can help Cooper “tug” his socks off, ”cover” his legs when they ache at infusion, “get” things off the floor, “bring” the hockey puck after Cooper hits it into the yard, “push” drawers and doors closed, and we are training her to “find mom” so that she can come find me when Cooper is in his body cast this summer and needs mom.  She is the best snuggler, the slowest walker, and the hairiest creature I’ve ever encountered.  She gets to accompany us to Cooper’s weekly infusions, all the specialist appointments, and I believe she will accompany us to Delaware again this summer.  That’s a bit muddy right now, but I pray it will be resolved soon.

So, looking at back journal entires here, you’ll see we were preparing for Cooper’s lower extremity reconstruction this time last year.  Thankfully Dr. Mackenzie discovered Cooper’s severe spinal compression and we needed to address that ASAP instead.  Now we are back to where we were, preparing to reconstruct his hips (they are missing the hip shelves that keep the ball of the hip in the socket), put eight plates in his knees (so that they straighten as he grows) and align his ankles.  The combination of these two surgeries (right side June 9 and left side June 16) will leave Cooper in a spica cast for 7 weeks.  Then he’ll get the cast taken off and need to learn to walk again while going back to school (if in-person school even happens this year) most likely in a wheelchair and then a walker.  I understand that he’ll be able to walk again on his own by around Christmas.  But from then on, he will be free of the constant leg pain, and his gait will be better.  An overall quality of life improvement.  

The muddy part is that COVID hit.  Currently Nemours/Alfred I duPont Hospital for Children’s policy is that ONE parent gets to be admitted with a child admitted for surgery. No tag teaming to go somewhere else to rest, shower and come back.  No chance to let the dog out to pee or exercise.  THAT SUCKS.  And I get it - better safe than sorry.  We are hoping the policy changes before we go or that we get special dispensation.  Due to the visitation restrictions and COVID in general, we also decided that the only people traveling for the surgeries will be Cooper, myself, Brian and hopefully Velocity.

In other Cooper related news:
  • He got an eyeglass prescription that WORKS and he is wearing his glasses when he needs them!  This didn’t come without a lot of arm waving, ruffled brows, possibly a raised voice and angry emails on my part.  Advocating for your kid can be tough.  And even tougher when you don’t understand the terms, the biology and the science that makes it work.  
  • Cooper also picked up a pair of fabulous hearing aides that he wears all the time.  His hearing has fallen completely out of the “normal” hearing range.  He loves that they are green and blue and that they are Bluetooth enabled ear buds that he can listen to music with.
I’ll set up a meal train for when we return.  Returning!! That’s a foreign concept. We bought one way tickets there.  If there is anything we learned from last year, it’s to wait and see when and how we’ll be able to travel and THEN buy tickets (or a one way rental car) so we aren’t slapped with change fees and headaches just trying to get home with a kid who just had major surgery.

If you feel compelled to help with travel expenses (don’t worry - we’ve hit his out of pocket max the first week in January!! These two surgeries are FREE!) We are humbled to accept GrubHub gift cards, Hilton points (to help pay for our lodging at the Extended Stay near the Hospital), or Venmo (@Christine-Tippett)/ cash/ PayPal for food, car and more travel (home from this surgery as well as another round trip to get he cast off).

As always, I’ll keep you up to date here on Caring Bridge.  Thank you for your love, prayers, support, bottles of wine, meals, donations, laughs, shoulders to cry on, texts, emails and camaraderie during our journey.  It’s far from over. 
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