Rare disease parents need each other. We depend upon one another.
One of the first pieces of advice I give newly diagnosed families is to find your person, that someone you can call when you are in the depths, or in the hospital, or relishing that your son can still say “Mommy.” The person who can cry with you when he can’t anymore.
I’ve been blessed enough to have my people for awhile now. And we try to get together at least once a year.
That time is this weekend and I’ve been relishing the expectation of breathing deep of my community, people who get the day to day struggles of the MPS life.
This is for them.