The story of Vincent
In 2016 my son Vincent was born. Weeks after he was born he started experiencing symptoms of sweating, shaking, paleness and blueness in the lips and hands and had awful runny diapers that his pediatrician kept saying was normal. She then thought he had a heart murmur and referred us to Duke Childrens Cardiology. The appt was made for July 19, 2016. I went to work that day like any other day. When I got off I picked Vincent up and we took him to his appt at this time he is now 3 months old. When we get in there and checked in they do an ekg and echocardiogramm on his heart. 10 mins went by and the nurse rushed in and said the cardiologist wanted to speak with me that it was very important. She called him on the phone the was in the room with us and he said Miss Parker how fast can you get Vincent to Duke in Durham, NC. I was scared to where I asked what do you mean? What’s going on? He explained that it was so serious my son could die. So they transferred us to Cape Fear Valley medical center in Fayetteville and life flighted us out to Duke we got there around 2am. The next day doctors came and spoke with me and told me my son’s heart was so enlarged it couldn’t pump the blood through his body like it was supposed to. And that my son would die to plan a funeral. They ran more blood work and did genetic testing on him and said it would be back in 3 days…It came back that very next day it was so quick. A team of 15 doctors came in and explained to us that my son had a genetic disorder called Infantile Onset Pompe Disease and they only had one drug that was FDA approved to be given. An enzyme replacement therapy drug to help my son try to get better and have some kind of happy life. My son was born with an enlarged heart and traumatic frog like legs. He is 8 years old now. 3 years ago he was walking and doing good and has since stopped walking but has not given up. He was diagnosed Autistic in 2023 so it’s hard to get him to understand certain things that he has to do. He wears afo’s on his legs, walks in a gateway trainer, and has a stander and wheelchair to help get him around. His younger sister who was born April 24, 2017 passed away from Infantile Onset Pompe Disease while I was 26 weeks pregnant with her. We live on the East Coast where not many people are educated about Pompe and the different kinds there are and the effects that our family and friends face on a daily basis. As a mom of two kids who have it one whom passed. I have been trying to reach out to people and spread awareness so that others may know and see the signs before it’s too late. I created a Facebook account under my name called LIFE and create reels and share them showing what he goes through every day. What he can and cannot do. I am still looking for groups and foundations that can help me as I am a single mom. We do the best we can. My son has overcome so much and still has so much more to overcome in life. But he is strong, happy and always energetic. Nothing stops him and he is motivated to keep living and doing what he does best and that’s to put a smile on people’s faces no matter how bad or good he may feel. I urge people to get tested if they can in whatever state they are in. I urge people to reach out to their doctors and ask questions. Without answers this will continue to hit people in the face and knock them down. We have to keep hope alive. “Together we are stronger”! So let’s keep hope and faith alive and help spread awareness for our children and older people who fighting this battle every day. Be aware and spread awareness.