This is our beautiful little warrior princess, Nova, with her big sister.
We have been struggling with how, or even IF, to talk about Nova's story, but ultimately decided (realized) that we were going to need a lot of support if we were going to be successful in navigating this journey.
For the first 3 weeks of Nova's life, we were blissfully in a bubble of joy with the new addition to our family. We were enjoying lots of baby cuddles and bonding time with this beautiful little soul, adjusting happily to our new family dynamic. Then, we received an unexpected call to inform us that Nova's newborn screening test had shown a genetic mutation and that our beautiful baby girl may have a chronic life-threatening disease. The bubble burst.

The following weeks became a tornado of LONG (5-6 hours) doctors visits for various testing and monitoring and discussions with a TEAM of specialists - none of which could have prepared us for the outcome. Nova had in fact received two genetic mutations, one from each Kashif and I, for a genetic disorder neither of us had ANY idea we were carriers for. Our baby girl has CYSTIC FIBROSIS.

Our life has completely been turned upside down and inside out, and will be forever changed by this news. While Nova appears to be perfectly healthy, inside her, there is this silent disease attacking her lungs and digestive system, which will get worse as she gets older, as this is a progressive and chronic disease.

We are hopeful that with our help, the guidance of her VERY LARGE care team (which includes a Pulmonologist, Respiratory Therapist, Nutritionist, Genetic Counselor, Social Worker, Psychologist and Registered Pediatric Nurse), and the extensive therapies they've recommended to help prevent damage to her organs, that she will be able to live a full and healthy life, albeit with A LOT of interventions and a life-time of monthly doctors visits.

There have many disappointments already, and we are (obviously) struggling with all the ways that this has impacted our daily routines, and our hopes and dreams for our daughter and our family, but we know that in the end we will overcome whatever challenges we will face. We will do everything and anything we can to protect her and help her overcome the obstacles that this disease will put in front of her. Her feisty spirit is already so STRONG and I know she will grow up to be a FORCE in this world. We will not let this disease rob her of her life, or become the defining thing about her. She is so SO much more than her diagnosis.

There are a bunch of related expenses we're going to have to cover, but the most important one right now is transportation. We have no way of getting to our appointments other than relying on my mom for transportation, who is the sole income for her household, and whose transportation has a lot of miles on it. This is simply not sustainable. So, the first thing we need to do is get a car. We're setting the target at 10,000 for now, please help if you can. Thank you