Hunter Medical Independence Journey

“We need to talk” that is the most heart wrenching thing to hear from a Doctor when you are pregnant. The second hardest thing is being told your beautiful baby boy that you are carrying in your belly is going to have the fight of his life and it’s going to be a journey for you and him. Hunters birth wasn’t the story they tell when describing the most “perfect birth story”. It was scary, it was nerve racking and it was lonely. Hunter was born May 12, 2016 and was immediately taken away with a massive NICU team. I had the opportunity to kiss my baby, to see my baby and then he was gone. We spent the first month of his life at the hospital, and when we were finally discharged we spent almost every other day at the hospital so it felt like we had never left. For the first 3 months of Hunters life we spent more time at the hospital than in our house. We spent more time being admitted or having to call an ambulance then getting to enjoy the “newborn phase”. The following three months were very much the same, filled with many appointments, unexpected 911 calls, tear filled ambulance rides. When we reached a year it was like a “we did it “ moment. We conquered a year and I was so incredibly proud, but that year was filled with some of the hardest things I though we ever achieved. Little did I know year two was going to be even harder. That was the start to our years of surgeries and sedations. Since birth Hunter has been sedated more than 20 times, he has had over 10 surgeries on different parts of his body and as the years go on that number will double if not triple. Through all of this we focus on the positives, we focus on giving Hunter the most independent and authentic life. 


Independence is key. It  is something that  the average person takes for granted  most  days. Turning on a light, going to the bathroom, walking onto your back porch all of those simple acts of independence is something that Hunter must strive to achieve every day.  Hunter was diagnosed with Kniest Syndrome when he was 2 years old. It is a very rare form of dwarfism that effects many different parts of the body including the eyes, ears, spine and legs/ feet to name a few. His diagnosis is 1 in a million, literally. Which is kind of crazy when you think about it as we live in the amazing province of a Nova Scotia, which has just over 1 million people combined! Hunter was diagnosed at birth with two chromosomes mutations and one deletion. It took two years and many doctors globally as well as within Canada to truly diagnose Hunter. 


Hunter is a real life superhero. He has conquered so much in just a short amount of time I cannot wait to see just how much he can truly accomplish. We see many different supports and therapies to help Hunter achieve his full potential. ( Literally every therapy and service offered in Nova Scotia, just to make it more understanding! )  The one thing we strive more than anything is independence. Independence to eat, to get food, to go to the  bathroom and most importantly  the independence to walk. We spent 3 almost 4 years with Hunter not eating. That was a struggle and a journey for everyone. We started with a nasal gastric feeding tube, then a stomach tube was surgically placed so that Hunter could keep growing and we could work on the oral aversion issues that he continued to have. Hunters first true love for eating was donuts ( which I think everyone can agree is an amazing choice) and from then on we got donuts whenever and sometimes even multiple times a day just to help me fall in love with food. In November 2019 after almost 4 years of having a feeding tube to eat Hunter was able to have his tube removed after extensive hard work on both his and everyone else’s part supporting him on his eating journey. It was an emotional day as well as an empowering day. Hunter defies the odds every single day. He conquers the impossible and inspires so much. So after we were able to cross one of our “big goal” items of the list we moved right on to the next one. Walking. 


Walking is something that we are still working towards. Over the past 4, almost 5 years Hunter has undergone numerous foot surgeries. He has had over 30 different casts for his club foot ( i stopped counting after a while) and has had many different therapies and aids to help strengthen his legs and help him  fully achieve independence. Hunter recently underwent his largest and most aggressive surgery on his feet  leaving  him with numerous scars. That surgery is and was our last hope for independence. During the day Hunter must wear special made braces that ensure that his feet and legs are supported and that the muscle and strength can rebuild within his legs. At night he wears custom made casts, they ensure that as he sleeps and relaxes that his feet are held in the most perfect turned out position for muscle memory. Because of all of the time that Hunter spent in casts he lost SO much muscle tone ( and he doesn’t have a lot of muscle or weight to lose to begin with only being 27lbs) so it has been a journey and a struggle helping him build leg strength. Remember how to stand or really learn how to properly stand on his brand new feet. 

As the weather gets warmer we are looking forward to all the summer days we can hopefully spend outside. Play therapy is something that we work hard at. The ability to be working on standing, walking and independent movements without Hunter noticing, that is always our main goal. One thing we struggle with during the summer is  the absolute ability to have independence. To go outside Hunter must be carried. He cannot spend lots of time on  our deck, due to its age it causes  splinters and rashes on his legs and bottom. When he gets carried on the grass he is stuck, though we love mother nature she doesn't make it easy for  Hunters walker to  move about the backyard. The same can  be said for  our driveway. It is long and amazing, but the gravel that currently resides on it makes it almost impossible for Hunter to walk up and down. 

All of the funds raised will go towards the renovation costs and any medical expense costs that come with the result of Hunters ongoing medical journey and to assist with Hunters independence. Our future is a large question mark, his path in life with be paved very differently then others we are just determined as ever to make sure he has all the absolute tools needed and necessary to achieve the highest of heights and have the best comfortable life. 

For all info on Hunter, the start of our story and tons of photos and videos check out our page Little Boots, Big Heart  on Facebook.

*if you prefer to donate directly to Hunter [email redacted] for emt *