We found out about Amelia’s condition on 12/13/22. We were transferred to a high risk clinic. The doctor said that Amelia has Dandy Walker Malformation. Her cerebellum never formed, instead there was a cyst. I was told that I should get an abortion up until I was 38 weeks when my beautiful babygirl was born 4/4/23. They said we are young (we’re both 19) and don’t have to commit to something so big. That it’s counted as medically necessary. I held her for a minute then they swept her off to the NICU. There she was diagnosed with Dandy Walker Malfunction and congenital muscular dystrophy. Her retinas aren’t attached all the way so she can’t see. She spent a month in the NICU. She had a shunt put in to drain the fluid in her brain. She has a g tube to eat every 4 hours. She has no social interaction. Ex. she doesn’t laugh or smile. She cry’s when she hungry or when her butts dirty or when she wants her binky. She sleeps a lot. She has a nurse, ot, feeding therapist and social worker that see her once a week. She’s on oxygen 24/7. Recently she’s started to have seizures. 2 weeks after they started she was diagnosed with infantile spasms. She’s on a steroid medication to help then one other to hopefully prevent other types from occurring both 2x a day. She has to have eye drops 3x a day. She’s on an acid reflux 1x a day. We were given 3-4 years with our precious angel. If we aren’t able to stop the seizures we could loose her a lot sooner. We love our little girl. Not all of our family was on board with us keeping our baby. A lot of them said we were being selfish, that we were making her suffer. We’ve lost a lot of people on our road with our daughter. But she’s fighting she’s a strong little girl. We will fight for her and advocate for as long as we can.
***We offer families with children who have life-limiting conditions (18 & younger) or families with adults with life-limiting condition who have children (18 & younger) the following:
👉🏼Portrait session at a location best for their needs
👉🏼All edited digital files
👉🏼5×7 prints of all edited photos
💈If you would like to donate: www.littleheroesinc.org