Today we’d like to introduce you to Alexandra Benson.
Alexandra, let’s start with your story. We’d love to hear how you got started and how the journey has been so far.
So my story isn’t really focused around a product or business but more like a project. In March of 2016, I was 25 weeks pregnant and we found ourselves faced with a new reality – our unborn daughter was diagnosed in utero with a critical congenital heart defect.
Essentially, the electrical system in her heart was broken. Our daughter, Edith, went on to be born in May of that year. After birth, they discovered a second heart defect and in November of 2016, at just five months old, she underwent her first cardiac surgery. Today she is almost two and fully pacemaker dependent. The news of a diagnosis really rocks your world. However, our family resolved that though we may not have control of our circumstance we do have control over our response to it.
For us, that came in what we like to call “live kind. love big.” It became our family’s mantra and really our way of finding purpose in the hard stuff we were walking through. Through our daughter’s diagnosis and disease came The Heart Hope Project – a little grassroots project working alongside Children’s Healthcare of Atlanta (CHOA) to encourage other families affected by pediatric cardiac diagnosis’ and congenital heart disease. Our first big project was to put together an inpatient party for the children and their families who are at CHOA.
Many of these kids are recovering from heart surgery, fighting to get better, or even awaiting a heart transplant. We rallied together a community both locally and literally across the world to raise the funds to make it happen. We are not an official non-profit so fundraising proved to be a little tough but there are so many incredibly kind and generous people who have played a part.
The event will take place in June where we will be able to provide a fully catered meal, entertainment from some favorite princesses, and gifts for all sixty patients and their families including a tablet for all of the children. We are not naïve to think that we can meet the totality of a family’s needs with a fun little party, but our hope is that we can bring encouragement to those that are discouraged. That we can offer a moment of rest to those that are exhausted.
And that we can be a community to those that are lonely- that they can see that little tablet month from now and remember that they’re not alone.
Overall, has it been relatively smooth? If not, what were some of the struggles along the way?
In regards to our daughter or the project? I guess both answers would be no. Our daughter’s story has been filled with some incredibly hard lows. However, it’s also been marked with some amazing highs. As far as the project, the biggest struggle has been fundraising. Because we’re not a 501c(3) (… yet) finding people to contribute financially has been a challenge.
I am so grateful that there are a handful of fellow “heart mamas” who have come alongside our family to make it happen and together we’ve pooled our resources to meet our goal. Our hope is that this time next year we can operate as a 501c(3) and that this little grassroots project can have a lasting impact in the community.
Please tell us about The Heart Hope Project.
We are committed to encouraging, uplifting, and fostering hope in families affected by pediatric cardiac conditions and congenital heart disease.
We are so incredibly fortunate to have access to fantastic medical care through CHOA and the resources that come with that. Our goal is not to compete with the other resources out there, but instead to come alongside and partner with them to be a good community for families who have or are walking through diagnosis’ like our daughters.
Congenital heart disease is THE most common birth defect so the need is great.
If you had to go back in time and start over, would you have done anything differently?
I think the first thing that comes to mind is I may have attempted to obtain the 501c(3) first. However, in all honesty, I don’t know that I would have done even that different.
It’s been so encouraging to see this community rally together. The heart community, in general, does that really well and I’m honored we’ve been able to experience it firsthand.
- Email: email@example.com
- Facebook: https://www.facebook.com/thehearthopeproject/