We had the pleasure of sitting down with Kamronn, the mother of 2-year-old UCP-OC kiddo, Ryleigh. Kamronn first brought Ryleight to UCP-OC about a year ago and the moment you meet these two you can tell they have a most special bond. There is no one better to tell Ryleigh’s story than her mom, so read on to find out more about this dynamic duo.
How long have you been involved with UCP-OC? We have been involved with UCP-OC for about a year. We started with physical therapy and just recently began speech therapy as well.
That’s great! Has UCP-OC impacted your life? UCP-OC has been such a great addition to what I do with Ryleigh on a daily basis. It’s brought so much extra support to our family. It’s really like a support group for the families.
We’re so happy to hear that! Speaking of the daily basis, what are some of Ryleigh’s favorite things? Ryleigh loves pretend play, baby dolls, music, dancing, books and gymnastics. She can have fun doing just about anything!
Before we hear more about Ryleigh’s story, can you share an important milestone or memory? A milestone I’ll never forget was the first time Ryleigh’s therapist saw her walking on her own. Hearing and seeing the excitement on their faces and knowing it was the same that I had when I saw it for the first time. The feel of family that the UCP-OC therapists all bring is remarkable and knowing they are as proud of her as I am is overwhelming.
Kamronn, can you give us some background on Ryleigh and her story? My sweet Ryleigh was born at 37 weeks. She had her own agenda coming into the world after only 30 minutes of labor. I knew my life had changed the moment I held her and she held onto my finger. We left at 2 days ready to conquer the world. Little did I know that at just 6 days old she would be diagnosed with Down syndrome, it’s a day I will never forget. Diagnosis or not, I knew I was lucky to have her and that life with my daughter would be amazing. I also knew our story had just begun. Then, at 3 weeks old, we found out she had a heart murmur and her cardiologist later confirmed she did in fact have a hole in her heart. As a single mother, I was overwhelmed by the feelings and rush of emotions. But, I looked to my mom and she told me what I already knew, that everything was going to be okay. She said, “We’ve got this; our little girl is a fighter, a rock star.” Later on we met with the cardiologist and spoke about her condition. Learning she had VSD, or Ventricular Septal Defect, which is most commonly found in children. I now had to choose to surgically have the hole closed or wait to see if it would close on its own. It was a huge decision to make but I decided to do the surgery. Since she was only 5 pounds we had to wait until she was 5 months old in hopes she would double her weight. As the time got closer, the feelings got more surreal. On the day of her surgery the hours felt like days but our little girl was a fighter, and she left that surgery as a champion! She did great and was released from the hospital 4 days later. I knew from that day on she would conquer the world. Fast forward to now and she is still everyone’s Rock Star! The minute she walks into a room she fills it with laughter and joy. She is excelling in all milestones and is passing “typical” children in goals. In fact, other moms ask me for tips because they are so impressed with Ryleigh! As a mom, it makes me so proud to see how she rises above challenges and her perceived “limits.”
Thank you so much for sharing your and Ryleigh’s story. Is there anything else you would like to share with our readers? I would love to tell any parent that you are not alone. That a diagnosis doesn’t define who your child is and will be. No matter what they set their heart and mind to, remember that they can achieve it. We are their voice, supporter, and cheerleader. So, it is our duty to believe in them. I feel that our purpose in life is to bring awareness; to let people know that no matter what diagnosis is written on a piece of paper, you should never judge a book by its cover. Our children can and will do amazing things. Give them all the opportunities possible, help build their confidence and help them live their dreams. My daughter is my hero, strength and courage, my reason for everything. She is my world and, most importantly, my best friend. I’m more proud of her today than yesterday, but not as much as tomorrow. She has taught me more in her 2 years than I have learned in my whole life. I thank God everyday that she chose me to be her mommy. So, be proud and don’t let a diagnosis bring you down. These days, months, and years will be the best time of our lives. Remember not to set limits, instead keep opening doors for them to succeed. They need opportunities, not limits.
**Kamronn has created a team for STEPtember in honor of Ryleigh. To help them reach their fundraising goal, click here to donate to their team!