VeLoure Needs a Heart: Family in Need

Sending blessings to all. Hope all is well. As for us, our baby girl, VeLoure Victoria, was a twin birth, born prematurely with a serious congenital heart defect. Her exact diagnosis is a complicated one, so the best way the doctors described our special baby girl is that she was born with a single ventricle, hypoplastic aortic arch, double outlet ventricle, and much more. It’s very complex, but that’s the start of her journey. She has had three major open-heart surgeries and multiple mini procedures that keep her hospital-bound for most of her precious life. As parents sticking by her side always, it has been a really tough road financially as we have five other children we must attend to, but someone is always by VeLoure’s side. It has caused a major shift in our finances; Dad is no longer able to work due to being home with the other children and Mom being bedside and vice versa. We have only one vehicle that is barely getting us by for now—a seven-seater for a family of eight, which includes two car seats, two booster seats, strollers, bags, etc. It’s very complicated, but we’ve been making do. We are very thankful to even have that.

Our most recent complication is that now our baby girl has been to three different hospitals, and the second hospital transferred her to a heart transplant center where now her current diagnosis stands that she’s in need of a heart transplant. This is devastating news to the family as after all she’s already been through, we thought she was OK until her third stage surgery at around 2-3 years old. Unfortunately, she didn’t make it to that point. Stage 1 (Norwood procedure), Stage 2 (Glenn procedure), and Stage 3 (Fontan procedure). She spent her first five months in the heart NICU/PICU, six months home, and now back hospitalized, where she may be until she receives a heart, which the estimated time frame could be from now up to a year or more of being hospitalized, as what we have been told by her heart transplant team of doctors. Her current hospital is over two hours from home, definitely longer depending on traffic, and could easily be a three-hour trip one way. So, it’s a lot of wear and tear on our only car, which is majorly needed to get the kids to and from school, their sports activities, doctors' appointments, grocery stores, as well as most of all, get to and from VeLoure.

We don’t have much help seeing that most of Dad’s family lives out of state including his mom and Mom’s an only child, with the children’s Nana helping out mostly. So, we’ve been dependent on donations from neighbors, friends, family, Ronald McDonald’s House, a charity that helped pay up one utility bill, and we’ve exhausted most of those as this has been a long journey. We know and have faith that VeLoure will pull through this trying time, and as it is taking all of me to write this, we ask if there’s anyone out there who is willing to donate to help us out, you will be truly blessed. You just don’t know what you will be doing for our family in our time of need. We will keep those who wish to stay updated informed by following our IG page we have made dedicated to the heart twins @Heartwins23, and I will also be dedicating a YouTube channel to the twins and about VeLoure’s journey. Bear with me as this is a tough load to carry. Thank you all in advance. God bless.