There are only a couple hundred of those with his same diagnosis in the US. I believe I won the lottery.
There may be 10k’s or bumper stickers one day for his syndrome, or there may not. He may walk one day, he may not. He may talk coherently one day, he may not. He may be potty trained one day, he may not. He may eat without needing a g-tube one day, he may not. He may sleep thru the night one day, he may not. He may make it 4 months without a hospitalization, he may not.
Our little bit of Rare brought us a life with wheelchairs, weekly doctor visits, sleepless nights…but that pales in comparison to what he brought us in the form of greater understanding of sacrifice, love, priorities and an enlarged life perspective.
Love my one in a million! Happy Rare Disease Day!
Other parents of a rare child . . . please share your feelings in the comment section of this post.