Living with a rare disease can be lonely, isolating, and awkward. How do you explain a rare, terminal disease like Batten to young children who stop and stare? How much do you mention when you meet someone new and they ask about your children? Gloss over it, mention you have a son and his age. How long do you keep up the happy face so that you don’t become depressing and annoying to your friends and family? Who do you talk to when no one within a hundred miles is walking the same path as you?
Facebook, email, phone calls have been a wonderful resource for our family. But nothing compares to meeting another parent face-to-face, meeting their children. Without saying a word, you know they get it, completely.
Batten disease isn’t like other childhood diseases or disorders. Cancer, Cerebral Palsey, Autism; almost everyone has heard of them. But unlike those, we don’t have a local support group, we don’t have special clinics, or a hospital ward where we frequently spend time with other families. We feel out of place with “special needs” groups. No amount of therapy will heal Elijah. No amount of medication will heal Elijah. Batten disease is shrinking his brain and we lose a bit of him every day without any way to stop it
This past summer with help from a few special friends and family we received enough for Elijah’s mom and sister to attend our first Batten conference. It was amazing, emotional, helpful, eye opening, and to our surprise, fun! This summer we would like to try to attend again, but bring along dad and sister Grace as well.
If you would like to help us raise money to attend, and help spread awareness of Batten Disease and our story, we have a T-shirt fundraiser happening. Please visit out fundraiser page if you would like to purchase a shirt. Thank You! Click HERE to get to the fundraiser.