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How we began
McKenzie: Our first play warrior & mascot
McKenzie was born a warrior from the minute she entered this world 6 weeks prematurely. After a two week stay in the nicu, We were sent home to enjoy our new baby girl. Over the course of the next four weeks I started to notice she was having trouble eating. I contacted the pediatrician and she was seen the following day. It was at this appointment, when we noticed her oxygen levels were dangerously low and we were rushed to the emergency room. Once there, they got a X-ray of her lungs and noticed her heart was triple the size it should of been. We were immediately transferred to Barbara Bush Children's Hospital where she was admitted for two weeks.
The two weeks we spent at the children's hospital were the scariest and worst weeks of our life. Doctors were unsure of what was happening, but they knew it was life or death. McKenzie endured countless tests, blood draws and imaging while trying to identify what was happening and finally get a diagnosis. While working with the genetic team, we were pretty confident that McKenzie had a specific genetic condition that was terminal. We were then sent home for Thanksgiving while awaiting the call that would change our lives forever. The week of Thanksgiving, I received the call that McKenzie did in fact have Infantile Pompe Disease - a very rare and terminal form of muscular dystrophy. McKenzie doesn’t produce enough of the enzyme that allows her body to break down glycogen. Therefore glycogen builds up onto muscles and organs, causing them to be extremely weak and not work correctly. The only treatment for her disease is a lifelong, weekly enzyme infusion that takes 6 hours to complete. This allows her body to break down some of the sugar from building up, but it doesn’t prevent all of the buildup. We were told we would start treatment immediately, but there was no guarantee of how well it would work and what her outcome would look like. When we were told she may never walk, talk, breath, or eat on her own and we were devastated. That devastation quickly turned into survival and we continued to fight hard for the best outcome we could. This included weekly infusions and therapy (PT, OT & ST) sessions for the rest of her life.
Over time McKenzie was diagnosed with anxiety disorder due to the extreme medical intervention she has had to endure. It has made it even harder being the only child with infantile Pompe disease in the state of Maine, since she was diagnosed. Child life therapy played a huge role in her weekly infusions when we were in the hospital setting. When she was a little over one, after a long 9 month battle fighting to have her infusions at home, we were extremely happy and blessed when they were approved. It was at this point where I knew I would need help from a therapist in order to make her infusion day go smoother. Through common colleague’s, I was introduced to Kim and McKenzie fell in love with her. It was an easy fit. Kim started coming to our home every week to help McKenzie get through infusion day and process what was happening to her. It was the extra help we desperately needed and we were blessed to have found Kim.
McKenzie and Kim have a very special bond as McKenzie helped encourage Kim to move forward with opening her own practice to help more kids. Kim then finally opened Play Warriors, Inc. and did primarily house calls before finally opening up her own space!
McKenzie just turned 8 in October and is doing amazing! She has had almost 350 infusions to date and countless hours of therapies. She is a typical crazy kid that is full of life and determination proving doctors wrong from the very beginning of her journey. McKenzie is able to walk, talk, eat, and breath on her own - despite what the doctors said. She loves to play video games, go to school, and play sports and enjoy extra curricular activities. McKenzie is an infantile Pompe warrior and play warrior! She and Kim are in the process of publishing her first book called “Pompe Warrior” about her life with Pompe. A portion of the proceeds will be donated to fund Pompe research. Look for it on Amazon soon!
~Mom of McKenzie, Krystye Bettney
Mascot design by Katie Spofford
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