SuperWy vs. Mito

Wyatt- his name was thoughtfully picked because of it's meaning, "little warrior", and he's been fighting quite a battle since the very, very beginning.

After spending more than half the pregnancy on bed rest and a traumatic entrance into the world, Wyatt was born at 26 weeks gestation. 40 weeks complete a pregnancy- he was born 14 weeks prematurely, weighing only 2lbs. And there his journey began.

He spent many weeks, a few months, in the NICU until he was strong and well enough to come home. There were many times that he danced the preemie two-step, taking 2 steps forward only to take 1 step back shortly there after. But he made it, he was doing "well." Little did we know, this chapter in his life was only the beginning of a continuing battle he would fight.

His infancy was different than most babies. He hurt, his body was overwhelmed and he required a lot of extra care. He was re-admitted to the hospital several times throughout the first year. He had painful bleeding ulcers forming through his GI tract due to what was thought to be an allergy. We, his parents, were taught how to push tubes down his nose and into his stomach to feed him when he was unable to feed himself. He had surgery to have a feeding tube placed into his stomach at 9 months old. His development was delayed dramatically for quite some time until his little body learned how to move his muscles and control his own motion. But once he would figure something out you could almost actually see a little light bulb above his head begin to "glow". It was so special to watch him learn! He began to jump through the various milestones, no matter how scattered they were.

Throughout this time we visited his numerous doctors regularly. At 12 months old an ophthalmology appointment created one of many unique experiences we've had with our boy. Wyatt has bilateral subluxated lenses...the natural lenses in his eyes have detached from their position and were shifting inside his eye, causing his vision to be disturbed. When the light hits the iris of his eyes (colored part) just right they shake like jello because there is no lens supporting the area. It's rare and even more so in a child as young as he was. We received a vision prescription for glasses and a referral to another doctor for further testing. Nothing was found with the testing and we were then lead to believe that this rare eye phenomenon "is what it is" and nothing more. After additional procedures and surgeries on these sparkling blue eyes of his, he's now considered visually impaired and has an Intra ocular lens, much like a permanent contact lens, implanted in his left eye. His right eye has learned to compensate very well and it's lens has slowed from shifting, thankfully.

18/19 months of age was a month of great achievement for Wyatt. He began taking his first steps and he was also able to have the feeding tube removed from his bulging baby belly. He made a huge leap from his infancy and was now using each and every muscle to the best of his ability.

As Wyatt grew older, month by month, he continued to make slow, but somewhat steady, developmental progress across the board. One by one we happily checked off milestones on the lists. Though, even amongst the progress there was continuing medical concerns. Concerns that were once very quickly blamed on his extreme prematurity and rough beginning, but could no longer be attributed to.

As the list of medical concerns grew, each separate issue was viewed as such and rarely looked at as a whole picture. Our boy began to accumulate a long list of diagnoses involving multiple organ systems. There were also the few things the doctors were unsure how to address, particularly his episodes of intense pain in his extremities. I began endlessly researching in hopes of finding something to help him. He would cry, scream and refuse to walk at times due to the discomfort.

As time passed and more medical interventions were needed the doctors investigated further. His pain was progressing to include other areas of his body, more complicated medical issues were coming to the surface and we knew something was happening inside our boy's body.

There were several diagnoses given along the way that didn't quite fit, but was a best guess at the time, with a lack of other options. For several years it had been agreed that he had a progressive neuro-muscular disease, with a particular type being suspected. Eventually, we traveled to Atlanta, Georgia to see a research specialist, where our son would have a muscle and skin biopsy.

Wyatt is now a 10 year old boy who loves the fun that only an amusement park can offer, the magic of Disney World and movies that transport him away from reality. The "middle man" of two sisters, one younger and one slightly older than he. He's often like any other typical 10 year old boy in many ways, though his body is failing because of its lack of energy to properly function, all due to Mitochondrial disease. A progressive, degenerative disease for which there is no cure.

In October 2011, after having a severe run in with fungal sepsis, Wyatt was admitted into hospice care. At this time we continued to care for Wyatt in the same way that we had always done, including treating infections and hospitalizations when necessary. But his care changed in how aggressive we were with pain control and in turn honoring his wishes of being home as much as possible. When we entered into hospice care we never imagined it would turn into a long term relationship as it has.

In June 2012 Wyatt was brought home via ambulance following a brief hospital stay. At that time we were told there is nothing more they can do for our son except to keep him comfortable. We would continue to treat infections as needed. But his doctors prepared us for the moment that Wyatt would take his last breath and gave us a timeline of days to weeks. Unbeknownst to all of us, our boy had other plans. He has rallied his way through an entire year. It is now June 2013, one year later. And after a rich year that we were able to fill with many, many memories, Wyatt continues to fight. It's been an unexpected, unexplainable, unimaginably amazing year.

 In the fight of his life Wyatt teaches us how to keep going, how to live. He reminds us daily, both verbally and through his actions that "anything is possible". 

This is my boy, my hero.


My sweet boy, you did good. You did so good. 

Wyatt died on September 27th, 2013. He fought so hard to live each day of his 11 years, 2 months and 4 days with us.



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3 comments:

  1. I came across your blog. I started to read the first post and couldn't stop. You are so right, Wyatt is a super hero. People think those who wear capes, cute tights, and fly from building to building are heroes. The true hero's are those, who through suffering, teach us to fly from moment to moment with a hidden joy, power, and strength we cannot begin to understand. SuperWy, thank you far sharing life with us. You are an amazing young man and so is your family. You are all so blessed to have each other. Love Jodi ;)

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  2. A good friend of mine.

    - Daniel Leach, Preschool and 1st grade friend.

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    Replies
    1. Oh, and I can just skate in his honor. I used to play hockey. Stupid concussion.

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