If I meet you and you eventually find out that my daughter has a rare disease, please don't tell me you're sorry. We don't need your pity.
Princess leads an extremely normal life, with a few exceptions. Yes, we seem to have months were all we do are appointments. Yes, it can be difficult to tell her "no" when she wants something like ketchup. Sure she takes medication every day, but in this day and age, who doesn't?
Currently, she is on an IFSP. We don't know as of yet if she will transition to an IEP. We do know that there will likely be a 504 plan involved in her schooling. This is more for her safety than for anything else. It needs to be documented what she cannot have so that everyone knows.
Yes, she wears a medic-alert bracelet. I take no pride in this. It is simply to keep her safe, especially when I can't be there to do all the talking and telling of her medical history.
As for long term, we don't know what the future holds. We don't know if there will be more medications added. We don't know if there will ever be a "cure." We don't know if she'll ever be able to manage her disease without medication. We don't know for sure if she won't pass this on to her children. All we can do is take it day by day and see where that takes us.
The things I do know is that we are VERY fortunate. Princess was diagnosed within 5 months of symptoms presenting, being symptoms technically presented at birth. Most people with rare diseases will go for YEARS without a diagnosis. Princess's disease actually has a treatment. Many rare diseases don't. We know that this is God's Will for Princess and we will continue to follow whatever path is laid before us.
Princess will lead as normal a life as possible. She will have to know that she can't have certain foods and that other foods she can't binge on them. But otherwise, she's going to grow up knowing that she can do anything she wants!
As for Rare Disease Day/Month, well, we will probably always have our jeans and/or tee shirts and our ribbons on the last day of February. We may or may not do something in the schools when Princess gets there. That will depend upon her. We may or may not do the (Virtual) Denim Dash. We will just have to see what comes. The same goes for November for Prematurity awareness and the March for Babies. Only time will tell.
The things I do know is that we are VERY fortunate. Princess was diagnosed within 5 months of symptoms presenting, being symptoms technically presented at birth. Most people with rare diseases will go for YEARS without a diagnosis. Princess's disease actually has a treatment. Many rare diseases don't. We know that this is God's Will for Princess and we will continue to follow whatever path is laid before us.
Princess will lead as normal a life as possible. She will have to know that she can't have certain foods and that other foods she can't binge on them. But otherwise, she's going to grow up knowing that she can do anything she wants!
As for Rare Disease Day/Month, well, we will probably always have our jeans and/or tee shirts and our ribbons on the last day of February. We may or may not do something in the schools when Princess gets there. That will depend upon her. We may or may not do the (Virtual) Denim Dash. We will just have to see what comes. The same goes for November for Prematurity awareness and the March for Babies. Only time will tell.
