February 28th marks the seventh annual Rare Disease Day. As a parent of a child living with a rare condition we know how challenging a rare diagnosis is. There are thousands of families who have children living with special needs. While some have a good idea of why, what the future is likely to hold and what might be their childs future, some do not. There is no body of literature compiled to look at adolescents, adults, child rearing, careers, etc. for individuals living with Rhombencephalosynapsis.
So, instead the RS families live as a community supporting each other and sharing all the information we have. I am lucky to have this support system as well as my amazing family and friends.
Thanks to Kelly and Jeff for creating this beautiful way to honor our RS kiddo's today!!!