I have a dear, sweet friend whose daughter was diagnosed at 5 months old with an Embryonal Neoplasm of the Brain Otherwise Not Specified. Luckily Melanie is a NICU nurse and she very quickly recognized Amelia's subtle symptoms that included increased fussiness & sleepiness, overall decreased muscle tone, not moving her left arm as much as her right arm when playing with toys, and an increase in head circumference of 2cm in a weeks time. Theses symptoms combined with Melanie's persistence lead to Amelia being admitted to Akron Children's Hospital. She underwent 2 craniotomies, 4 rounds of chemotherapy and 2 bone marrow transplants.
Amelia has experienced post treatment residual effects including
general global developmental delays (speech, movement, milestones, eating)
Moderate/severe hearing loss in both ears (the carboplatin and cisplantin causes hearing loss)
left sided hemiparesis (mostly left arm)
Oral aversion and has a G-tube for eating
Vision problems due to muscle control, Sleep apnea, Seizures and Neuropathic pain.
Amelia has a personality that is one of a kind! She’s so tenacious, ornery, full of sass and loving all at the same time! Her brother Blake is her best motivation and therapy! Everything has to be her idea when it comes to therapy but he can get her to do all kinds of things! Her most productive therapy sessions are when he’s around!
Some of her favorite things!
She LOVES Moana, swimming, looking at books, throwing balls(she has really good aim too), she’s super ticklish, loves and demands attention, and the only night owl in our house!
She is a miracle! Amelia is doing well despite all that was against her and is cancer free!
My son, Evan, and I are shaving our heads in honor of this resilient little girl and to raise money for childhood cancer research!
Now I need your help! Will you make a donation? Every dollar makes a difference for the thousands of infants, children, teens, and young adults fighting childhood cancers.
