Our lives were forever changed on March 29th, 2004 – the day my son Tailen was born.
There isn’t a day that goes by that I don’t wish that we didn’t have to deal with any of this, but at the same time I feel like we were put on this path for a reason. Having a child with a rare disease has opened my eyes and inspired me to live my life to the fullest while helping and inspiring others to do the same.
Rare disease is a part of my life now and a part of our family’s life. It is something we can’t change or ignore, but rather something we can embrace and care about.
When you get pregnant you hear about people praying for a healthy pregnancy and ultimately a healthy baby, you never hear of people praying for their child to be sick. Sadly, things don’t always end in the way we want them too. For our family we had been blessed with our twin girls (who just so happened to be rare twins known as “mono” twins) a couple of years before our son Tailen was born. Although I had had a good, healthy, and uneventful pregnancy our world drastically changed after he was born.
At just over a day old we noticed that Tailen’s stomach was distended and that he was extremely irritable. We had opted to keep him in our room instead of having him stay in the nursery (something we weren’t able to do with our girls). That first night though was rough and we ultimately made the choice to have him go to the nursery for a bit while I was able to get some rest. Within hours the nurses were telling us that his belly was getting more distended and that he was inconsolable no matter what they tried. Our pediatrician had luckily stopped by to check on us so going with our intuition, we asked him to assess Tailen. Within hours Tailen had been transferred from the nursery to the NICU and a pediatric surgeon was called in to assess him as well.
We met Dr. William Adamson just two days after Tailen was born and was told that he most likely had a rare congenital disorder called Hirschsprung’s Disease or that he had some other medical issue. We wouldn’t know exactly what we were dealing with until they had performed the necessary tests. For days we waited to get preliminary results and then at the end of the week Tailen was transferred to the NICU at the NC Children’s Hospital on UNC’s campus. There we finally got the results of the definitive tests and was told that Tailen did in fact have Hirschsprung’s Disease.
With a diagnosis in our hands we quickly began doing research to understand what Tailen would be facing. Hirschsprungs Disease, we found out, is a congenital disorder of the colon. It affects 1 in 5,000 people and is primarily found in boys. While there are treatments and ways to manage the disease there is currently no cure. If left alone and not treated death was most likely to occur.
At the young age of five days old Tailen underwent his first surgery, called a pull-through procedure. For the next year he was subjected to numerous doctor appointments, outpatient procedures and daily dilations (which thankfully he doesn’t remember). By the time he was two years old he had only been hospitalized one time and seemed to be doing well considering. We started to feel like we had a handle on the disease and that Tailen would live a “normal” life regardless of his diagnosis.
Tailen’s life seemed to be going well and we only had some minor bumps in the road. Unfortunately that all seemed to change when he was about eight years old. He started experiencing a lot of stomach issues and was not able to eat without feeling full and on the verge of throwing up. We once again decided to have him undergo various tests to see what was causing the issues, especially since he had been doing so well. In December 2012 we found out that his original surgery had not removed all of his “bad” colon and he would once again have to undergo surgery to have a redo pull-through procedure.
2013 ended up being the turning point in Tailen’s management of his Hirschsprung’s Disease. In January he had his second pull-through procedure. In March he was hospitalized for almost a month due to complications. In April he underwent more tests where we found out his pyloric sphincter was abnormally small and would require surgery to dilate the pylorus in order for him to be able to eat. In May we decided to have him undergo yet another surgical procedure to have an appendicostomy and a Chait tube placed. And in July he underwent Botox treatments for his pylorus to stay dilated. Throughout the remainder of the year we worked tirelessly to bring some normalcy to Tailen’s life.
Since that whirlwind year we have learned to handle this disease on a day to day basis. We continue to manage Tailen’s Hirschsprungs with the continued help of Dr. Adamson and the entire surgical team. We also partner with the gastrointestinal team to manage his nutrition intake and his pyloric issues. While Tailen will never be cured of his Hirschsprung’s Disease we are hopeful that as he continues to grow he will be able to manage it well.
Through all of the ups and downs Tailen has faced in the past twelve years the thing that has remained constant is his smile, resilience and drive to enjoy life to its fullest.
Keeping these things in mind while I attended the Global Genes Patient Summit last September inspired me to do more – to show the world that although people are sometimes given limitations it doesn’t mean they can’t live life to their fullest. I have always told Tailen that although he may have Hirschsprung’s Disease the disease does not have him; it does not define who he is or what he can do.
Working in the healthcare field I have come to learn that sharing your story and
inspiring others can be beneficial for both you and the people you meet. The Chasing Life Project was created to show the world that regardless of your situation you can live life to the fullest and inspire others while doing so. It is great to hear people tell you how they feel inspired to not sit back and watch life pass by, but rather for them to get up and do something great.
To chase life doesn’t mean you have to take trips, or go on crazy adventures it simply means to live your life beyond any limitations you have been given all the while inspiring others to do the same.
L
ife is full of choices. I could have easily chosen to sit back and feel sorry for myself and for Tailen, but I chose to fight. I chose to fight for Tailen to have a chance at a “normal” life, I chose to fight for our family to not be overtaken by Tailen’s illness, and I chose to fight to share our story and hopefully inspire others to do the same. Being affected by a rare disease was not something I ever thought would happen to someone I love so much, but it has in a way been a blessing. It has forced our family to look at life differently, to not take it so seriously, to cherish even the smallest moments and ultimately to chase life!
