Jolani’s Journey

As some of you may all know my baby girl was born with a half of heart, a CHD called Tricuspid Atresia with Pulmonary Stenosis & VSD❤️‍. She will need multiple open heart surgeries. My little heart warrior was born a preemie (36 weeker) 4lbs6oz she had her 1st open heart surgery at just 2 weeks old, she went into Cardiac Arrest and by the grace of God the doctors were able to resuscitate her. She was placed on a life support machine called ECMO for 5 days and again by the grace of God made it off. She’s a single ventricle patient and right now she is solely relying on a 3.5cm BT shunt to live. One day I noticed she was having uncontrollable movement , got her a MRI done which is when the radiologist and doctors discovered she had a stroke to the right frontal lobe of her brain which affected the left side of her body so her body was responding to the stroke with seizures. I tried my best not to put my baby girl story out there because people can be so judgmental and it’s a cruel world she’s just the strongest sweetest most beautiful soul ever and I want to protect her as much as possible but I’m at my breaking point and everyone needs someone, everything is weighing hard on me bills are continuously adding up with my baby girl being in & out the hospital(readmissions) , open heart surgeries, multiple doctors appointments per week (endocrinologist, hematologist, neurologist, cardiologist, physical therapy, speech therapy) , no government assistance/ ssi, no income coming in etc…with me being her full time caregiver it is impossible for me to work I’ve applied to many work from home jobs as well as government assistance and no luck yet… I currently can’t go back to work in my career as a medical assistant because my daughter needs most of my attention during this critical stage (I also have a 6 year old who’s completely healthy but he needs my attention as well ) , my baby girl is on strict routines day in and day out with her daily feeds and medications. I am so drained and stressed out physically, mentally, emotionally and financially , any donation will help & is appreciated & if you can’t donate even a simple prayer will be appreciated thank you ❤️‍ God bless you