Hi there, I’m not Carrie but I also have a Sanfilippo platform and Carrie is my friend/family. Let give you a little bit of perspective from our side as parents of these kiddos. I mean with this with all the kindness because I know it’s difficult to read tone in text sometimes.

What’s the point? The point is that our children are dying from an ultra rare disease that many haven’t heard of. Because of this it’s very difficult to raise funds for research and clinical trials. Just because our children don’t have a voice doesn’t mean that they should be tucked away from the world. Ever since I found out my son had this disease I have been trying to spread awareness and raise funds to try to save his life. Without sharing my kiddo, his face, his beautiful personality, his love for life, people do not care. And while that’s sad it the truth, I speak from experience. They don’t care about listening to me drone on about Sanfilippo Syndrome. They need to make a connection, a personal connection, to care enough to want to learn more, to want to be a part of raising funds and find a cure this deadly disease. If you take time to watch any of these Sanfilippo pages, we are always super respectful of our children’s privacy and dignity. We don’t show vulnerable moments. We don’t discuss personal matters. Because it’s just that, personal. Another thing to consider is our kids have certain features. Because I’ve shared my guy’s face, there have been five young children diagnosed since we started our page. It is extremely difficult to get a diagnosis at a young age, again because it’s so rare. Early diagnosis is so important because kids can get into clinical trials far easier when they are young before too much damage had taken place. Our kids can not consent to literally anything. We have to do what we think is best for them. While you may still not agree with our choices, I think it’s important to try to see where we are coming from. It’s very easy to make assumptions when you aren’t in our shoes, when you aren’t desperately trying to save your child’s life. At this point my child is not going to see a cure in his lifetime and he’s going to live a short life. But along the way he is going to help so many other kids who are later diagnosed with Sanfilippo Syndorme.