As many of you know, I was born with heart defects that caused to me to have 3 open heart surgeries and 2 catheterizations.  I was not diagnosed until I was 12 months old.  There were a lot of signs there was something wrong with my ticker but they were little things and my parents didn’t know enough to bring them to light.  Yes I was small (16 lbs at my 1-year check) and had constant weight checks and doctor appointments but it wasn't until I was in congestive heart failure did we hear my murmur.  That caused a whirlwind of activity for the next couple of months with my 1st surgery within a week of my general doc staying “I think I hear a murmur.”  Fast forward to today, I am a thriving 15-year-old with no meds and no restrictions!  I have no issues talking about my heart and showing my scar (obviously within reason).

Many of you may also know Chuck, my step-Gpa, has heart issues too.  He is currently living with a LVAD – a machine that is pumping the blood thru his heart and keeping him alive.  Because of his heart issues, he spent 72 days up at Mayo in 2020 recovering from kidney failure, liver issues, lung issues and having the LVAD placed.  Chuck has multiple appointments now for dialysis in Davenport a week and doctor appointments in Rochester.  LVADs are a specialty and not many are trained on them. Because of this, he has to travel from Marion to Davenport 3-4 times a week for his 6AM dialysis and Nana has to go every time because she is trained for the maintenance of the LVAD.  Rechargeable batteries, bad leads, concerns of power going out…these are all part of their lives now.

My story doesn't end there with heart issues in my family.  My Poppa has had bypass surgery almost immediately after finding out he had blockages.  My Grandpa has A-Fib and has had several procedures to help keep it in under control.  Both are doing well right now.

Because of the American Heart Assocation, more and more research is being done for families like mine.  Years ago, LVADs where not a thing.  Kids did not have a long life expectancy if they were born with heart defects.  Continued research and education is a vital part of these people beating the odds.

Please help us raise money and awareness needed for people who have families and friends like mine!!  You can help by donating or walking with us! If you would like to donate directly to help kiddos like me, you may write a check with Legacy of Life on the memo line.  This will then be directed to a trust that directly supports research for pediatric CHDs!  

Thank you!