Meet Talon

Our story starts with needing fertility help to get pregnant with our sweet little boy Talon. I was monitored every 2 weeks by the fertility doctor and then the high risk doctor until Talon was born at 33 weeks with Intrauterine Growth Restriction (weighing only 2 lb 14 oz), Pulmonary Vein Stenosis, Atrial Septal Defect, Ventricular Septal Defect and Patent Ductus Arteriosus. Long story short, Talon has undergone 3 open heart surgeries, 11 heart catherizations, a G-tube surgery, has worn oxygen his whole life and has been on chemotherapy the last 2 years in an attempt to slow down the rate of his Pulmonary Vein Stenosis. Talon is followed closely by his cardiology teams at Cincinnati Children's Hospital and Boston Children's Hospital. 

While at Boston Children's Hospital for Talon's 3rd open heart surgery, his sternal incision became severely infected and his chest had to be re-opened and wired. We were inpatient for 52 days as Talon fought for his life. We've had some rough hospitalizations but this one was especially terrifying. 

While being bedside morning, noon and night, we were dealing with lodging problems. We started at a nearby hotel, which quickly became very expensive as well as being limited on their room availability. We switched rooms a few times and then finally got in at the Patient Family Housing offered through BCH. We really only needed a place for all our luggage and somewhere to shower because we never leave Talon's side. 

Kerrington's Heart reach out to us and offered to help with some of the lodging expense and I can't even tell you what a relief that was. Kerrington's Heart has been a blessing to us in more ways than one. They host a phenomenal event each year called Cookies With Santa, and it's just for CHD families, which is a really special thing. Last year was our 1st year attending Cookies With Santa and we can't wait for it again this year. 

We also attended their Wild Hearts Fun Run Superhero 5K. It was a huge success and so much fun! There was music, a petting zoo, and so many real life superheros!

Kerrington's Heart offers so many events and programs throughout the year, to CHD families here in Kentucky. They have supported us financially, emotionally and spiritually and to say we are grateful for them is an understatement. 

Today is Giving Tuesday, and if you feel lead to give to this organization, just know that your donations are helping so many families who are really going through a rough and uncertain time. 

From the bottom of our hearts,

Thank You!   

Kyle, Beth and Talon Perkins

Meet Braylynn

Child's Diagnosis: Tetralogy of Fallot

Has Kerrington’s Heart impacted your journey? If so, how?:

Yes, they have made a huge impact in our journey. The chats, information, stories, prayers, and even the lovely cookies they sent (lol). We are forever grateful for Kerrington’s Heart and for Christy.

What’s one thing you wish you’d been told at the beginning of your journey?:

The one thing that we wish we was told at the beginning of this was we wish we had known about his heart defect before he was born so we would had time to educate ourselves and been more prepared.

Please share a little bit about your story:

On August 11,2019 Braylynn entered this world at 8 am weighing 2 pounds 14 ounces, born at 30 weeks. We didn’t know about his heart defect till 2 days after he was born. That’s when they diagnosed him with tetralogy of Fallot. He was already having a little difficulty with his lungs. It took a couple of days before it all sunk in that our child had congenital heart disease. On September 29,2019 they called me over from the Ronald McDonald house telling me to get to my child’s beside. His oxygen was going down and he was having “blue spells” right then they told us we would be transferred to Cincinnati Children’s Hospital. We get to Cincinnati, scared worried exhausted, to have the doctors tell us they was going to put a stint in his pulmonary value. While there was also battling other complications and a UTI that he had developed. They did the balloon and thinking that it would work till he would have his repair. That same night as he had the balloon done they called at 1:30 am to come back over because they either going to do a stint or full repair. When got there it was not what I wanted to see. The whole room filled with doctors, medication all laid out on the table in case they needed it and the look of worry  in everyone’s eyes. My heart was broken.  The Stint was a success. On Feb 24 2020 he had his first heart repair. Since then he has gained weight and is full of energy. We go to heart Dr. every 6 months to a year to check on heart because he still has a tiny hole and his pulmonary valve won’t grow with him so they check that and every time he hits a growth spurt he will have to have a repair to make it grow with him,. And he has a severe leakage in pulmonary value. If it wasn’t for God, prayers, our family, friends and Kerrington’s Heart organization we wouldn’t had made it thru all this.