I’ve always been inspired by families and individuals with our disease. I admire them all!
At least 4 grandparents (AB, MB, ON, NL) are active in our small Facebook group who have several (adult) children with VHL who now have their own children with VHL. They also have several nieces and nephews, and other relatives in other parts of the country. etc. with VHL. Although parents (and children) said that they “knew” about the potential VHL risks of having kids, (and we all hope for a cure), a couple of common themes from everyone was “it was worth it!” and “I’m glad you had me.”
I’ve had contact with at least a few other parents of adult children (or grandparents), with VHL over the years and they always talked about the proactive things that they did to adapt to a life of hospital visits, tests and treatments.