The Akron Heart Walk is going virtual this Saturday, August 29th. Although not in person, you are not alone as you can follow along with everyone live on Facebook with hashtag #AkronHeartWalk and ‘walk along’ with the Mason Dinger and his family! By participating, you are supporting lifesaving mission of the American Heart Association for people like Mason who has heterotaxy right atrial isomerism and people like him affected by heart conditions. Sign up to participate or donate now!
I was able to chat with Mason’s mom, Kelsy Singer about her adorable son Mason and what the Akron Heart Walk means to them personally – and how we can all get involved and help! Read on!
“Mason was diagnosed in utero at my 20 week anatomy scan with a rare syndrome called heterotaxy right atrial isomerism. It’s a big diagnosis that impacts multiple organs but mainly the heart. He was born with no spleen, midline liver, extra lobes in his lung, and many heart defects- HLHS hypoplastic left heart, TGA transposition of the great arteries, DORV double outlet right ventricle, TAPVR total anomalous pulmonary venous return and several other anatomical anomalies.
He had his first open heart surgery at just ten days old. His second at 5 1/2 months old. His final planned open heart surgery at 5 1/2 years old. He’s had Three open heart surgeries, three cardiac catheterizations, two cardiac mri’s, Tons of x rays and blood draws with many hospital stays. All of these procedures were required for him to survive but these surgeries are palliative- meaning there is NO CURE for congenital heart defects.
Many adults with single ventricular anatomy are facing multiple organ failure/damage due to the Fontan circulation. When people ask us if that was his last surgery we always emphasize last PLANNED surgery because what mason has, requires lifetime care and procures. Now we hold our breath and hope that his native heart can manage to compensate enough that it stays happy and his other organs will do the same. We are unsure of what the future looks like and really the only hope we have is for medical advancements.
Even after Mason facing so much adversity he has become the most loving and kind little guy. He’s brave and funny. I always describe him as an old soul. He’s wise beyond his years. It suits him though. He’s still very much boy who loves fortnite, Batman, swimming, riding bikes, and being his big sisters hero. ♥️ He’s shy but once you get to know him you find that you love him tremendously.
The heart walk is important to our family because we are raising awareness. That in turn, allows for more donations that further research and development. We personally know of many studies taking place that can potentially give Mason and children like him the opportunity to live full long lives if they are successful. By taking part in the heart walk you are personally helping our cause. You are raising awareness, funding, and a greater understanding of what Mason and kiddos like him are surviving with.
The Akron Heart Walk is a little unorthodox compared to the usual ones in the past but it’s still very much possible to leave an impact on our battle. Please consider joining the heart walk and learn more about what AHA American Heart Association and CHF children’s heart foundation are doing to improve the quality and quantity of life for congenital heart defects survivors. 💜
We want everyone to know that our son is so brave and we are very thankful for the team at Akron Children’s Hospital for the options and quality of care he so desperately needs to survive.
We don’t want to think about survival though, we want to think of him having the opportunity to thrive.
He deserves to grow up without so many invasive procedures.
He deserves to graduate, get married, and have his own children without the fear of heart failure.
This is the opportunity to personally impact the possibilities of a greater quality of life for Mason by joining the virtual heart walk, learning about congenital heart defects, and raising funds to bring better medical advancements.
We are very emotional and passionate about CHD and our sweet sons health. We are doing the best we can to give him the quality of life he deserves now but we hope and pray that he’ll have the medical advancements available to him so that he can continue to live and thrive.”
Heart hugs,
The Dinger Family
Thanks so much for sharing your story, Kelsey! Mason sounds like an incredibly brave and fun little guy! I hope that many of us can join the walk with our families this Saturday and continue supporting the American Heart Association – until people like your son can LIVE a life and thrive, not just survive. He deserves any and all medical advancements to give him the quality of life all children should have – free of constant fear and procedures.
This virtual walk is a great way to reinforce the importance to staying physically active and caring for others – something we all need a little more of during this pandemic.
