Medical Expenses

For those of you who don’t know, my son (Everett) was born with a rare brain malformation called Lissencephaly and a cystic posterior malformation called Mega Cisterna Magnum. Also known as “smooth brain” disorder, Everett is on a large scale of possible side effects of his diagnosis. Lissencephaly, alone, can range from having no gross or fine motor skills, nonverbal, behavioral, respiratory problems, seizures, g-tubes, and/or a shortened life. We were told he is 70% diagnosed with Lissencephaly. With that being said, the most important things we have been told is to take it day by day and to track his milestones. So far, Everett is thriving! He’s met every milestone and loves to kick us and grab my hair. Considering his diagnosis, we’ve had to have several more doctors appointments, genetic testing, an MRI done, and cardiology did an ultrasound on his heart: he has a mild case of pulmonary stenosis (heart murmur). We are working on disability, Medicaid and financial assistance but unsure how much we will receive considering we’ve been denied while I was pregnant for assistance. Bills are adding up fast and we would be more than grateful for any help that you are able to, even if it’s just a message saying hi (I know money is tight for most of us). We love our bean and am grateful he is thriving right now. We hope to see him continue to progress and with a little help financially, that would take some stress off our shoulders. Thank you for thinking of us!