I'm always preaching my story on a daily basis to all of our customers, but I needed to have a place for you all to read it and really understand the true meaning behind my business. It's no surprise to our loved ones that CHD awareness is a very big deal to my husband and I... but it might be more of a question to others who haven't heard our story.
Our son Ryker was born with a rare congenital heart defect, called hypoplastic left heart syndrome. After our son's birth, it became blatantly clear to us that we would live and breathe CHD terminology. The words "congenital heart defect" wasn't really anything we had ever heard about, or even known about...prior to Ryker. After his birth, things happened at a super fast pace. I honestly have a very hard time remembering the first few days after I brought Ryker into the world because it was the most abnormal birth experience ever.
As soon as he entered this world, the doctors took him and ran. He ended up in the NICU for several days, and then he was upgraded to the PICU. The days leading up to his first open heart surgery, we had no clue that the PICU would be our home for the next several months. Four days after Ryker was born, he suffered a stroke. This was a huge scare for us because he was days away from having his first open heart surgery and we weren't sure how that would affect his chance of him surviving the surgery... or if he would have another stroke in the future. A week later he had his first open heart surgery. He made it through and we were incredibly grateful! A few months later... Ryker coded, they resuscitated him and he came back to us. This was the first of 3 times within a few months, that we almost lost him. (I'm telling you this so that you understand just how scary and life threatening a congenital heart defect is) Later that year, He underwent his second open heart surgery and he made it through! Ryker is scheduled for his next open heart surgery the summer of 2022.
The first year of Ryker's life was "touch and go" and we were in the hospital a lot. It gave me plenty of time to think about our future and what I wanted it to look like. Ryker's journey with his CHD lit a fire inside me that will never go out. I will never stop fighting for my son or any other child out there, like him... that is battling a congenital heart defect. My husband and I earned the title "Heart Parents" and we embraced it. We are the proudest heart parents to our warrior. Ryker is a fighter and he has fought for his life. He earned the title "Heart Warrior" and he has embraced it with open arms. There are real super heroes on this earth and they identify as "heart warriors", they truly are the strongest kids you'll ever know. If you know one, I hope that you're proud...and I encourage you to learn their story and spread it like wildfire.
Congenital heart defects are not nearly talked about enough. Research is severely underfunded and people need to know more about what's happening to children born all around the world with CHD's. That is where I come into play. My name is Haley Sparks, and I'm a local heart mom here in Kansas City. Im an avid CHD advocate, Giving Committee Coordinator for Remington's Heart Foundation, and Owner of 'This Little Heart Of Mine Boutique' in Peculiar, MO. I started my boutique in honor of my son, Ryker... and all of the other kids just like him... who are battling CHD's. We donate $1.00 from every sale towards children battling CHD's via, Remingtons Heart Foundation, a local non profit devoted to helping families of children and babies fighting critical congenital heart defects.
Our story is not a sad one. We don't want to you to feel sad for us. We want to you to take what you have learned, and do something about it. We've been given this life and we chose to do something good with it. Help us spread CHD Awareness! Get involved! Our store represents our family and our story. It's a BIG part of who we are, and our son Ryker is the reason behind all of it!