What are some of the unique challenges of parenting when one of your children has a rare disease or disorder?
The judgment of other uninformed parents who think there is no reason your kid can't do whatever because they know this other kid who can, and they have xyz…

What was the process of diagnosis like for your family?
Long it took over 6 years. We started with one doctor who referred us on and on through 4 doctors and then because it was a genetic thing, we had to wait for all of the symptoms to appear before they could start treatment.

What additional tasks/challenges take up your time related to caring for a child with a rare disease or disorder?
Therapy. Lots of therapy and research. I find that doctors are willing to try new therapies if you do the research and bring it in. You have to make sure your doctor is up on the latest techniques.

What are your hopes and/or dreams for your child who has the rare disease or disorder?
To live as long as possible and be able to experience life to the fullest. To meet people who see them for who they are, and not the disease/disorder they have. Like Mr. Rogers; he liked the little boy for who he was and not for his fancy chair. life.

How has having a sibling with a rare disease or disorder affected your other children?
They all have different conditions. My son only has cat allergies, so we explain that we make accommodations for your cat allergies, so we need to make accommodations for epilepsy, autism, etc.

How has having a child with a rare disease or disorder shaped your approach to parenting?
I am more patient than before I knew what was going on. I treasure our time more. I know it is less than what others get, so little moments mean more.

What are some practical things that other families can do to help or support you?
If offering to make meals, please be willing to make them with dietary restrictions in mind — things like that. Not “we will watch the kids, but we won't take peanuts off the menu even though your child is allergic”.