In August 2013 my husband and I gave birth to our oldest daughter, “Mighty” Monti Ellen. She was the most beautiful little person that we had ever laid eyes on. As her parents, perhaps that’s a biased opinion but I digress. She was born with a critical Congenital Heart Defect (CHD) called Hypoplastic Left Heart Syndrome. After open heart surgery at 3 days old, complications started to plague our little girls fight to come home with us leading ultimately to her passing a month later.
Through the tragic loss of our little girl we have found a purpose and hope. CHD is so prevalent and its research so underfunded we knew our mission. We sought out a dedicated research fund, Children’s Heart Foundation to provide them with what they need to help doctors keep another child and set of parents from hearing the words that we did… “not survivable”.
As parents that spent a lot of time staying in Boston at the hospitals family housing, we also knew that we wanted to help support other parents going through the same worrying time; watching their child endure a fight that could take down a grown adult. Our fundraising goals are now twofold. We worked very closely with Boston Children’s Hospital and have set up a special fund to pay for parents rent in their low cost family housing to be close to their children while they are inpatient. This fund will take care of their full bill if their child passes away or if they cannot pay their bill. This was done for us when we lost our daughter and the feeling of support from this simple gesture was indescribable.
Please join us in sending more children home for longer and supporting parents for when they do not.
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