Our beautiful 2-and-a-half-year-old Stella was diagnosed with a rare metabolic disease called Niemann-Pick type C, also known as childhood Alzheimer’s.
She is rapidly losing skills, including her catch phrase, “thank you”, which I will never forget how her little voice sounded when she said it, for EVERYTHING, even after I changed her diaper! She will never walk, has lost the ability to sit on her own, and now has a feeding tube to eat, but she ALWAYS finds a way to have a smile on her face, a sweet laugh for a tickle on her neck, and she still says, “Mom”, and kisses me on the cheek.
We are currently seeking financial assistance, since her insurance doesn’t cover her formula, which costs about $184 a week. She has therapies Mondays, Tuesdays, and Thursdays, but recently had to cancel Thursday’s, due to missing too much work.
Stella is the sweetest little person, and it’s my life’s biggest heartache that this world cannot keep her.
Mom