Limp noodle, lazy bones, Mila bird, noodle bear…those were just a few nicknames we had for our sweet baby.
She loved music. She loved being talked to. She loved to be loved. Her head bopping received attention everywhere we went. It was her personal dance move. Once she could sit on her own, that is all she did.
Absent speech, crawling, walking, rolling over, brought grave concern at one year old. We sought early intervention and have been receiving amazing care from our therapists for almost four months. At almost 18 months old, my daughter, Mila, is just now beginning to crawl.
She doesn’t talk, but she makes the sweetest, most beautiful sounds. Her blue eyes sparkle for miles, and her smile is electrifying! After an MRI and a lot of blood work, her genetics panel came back with an abnormality called 15q24 microdeletion syndrome. What the heck does that even mean?
Unfortunately, it is a new found disorder that does not have a lot of supporting evidence. The spectrum of quality of life is so broad, we might have unanswered questions for years to come. It will be many months before we can meet with a genetics team.
I do not know where to even begin.
I need more answers.
I need more evidence.
I want to be involved.
I want to talk to other moms fighting this same fight.
I need to give Mila the best quality of life possible.
I will fight for her until I take my last breath. We have to fight. If we don’t, who will?