In August 2012, Aliyah Krause was diagnosed with Neurofibromatosis (NF). NF is a genetic condition, and it affects about 1 in 3,000 individuals. Since Aliyah has been 18 months old, she has had MRI’s every six months. In addition, she has regular appointments with multiple specialists, including endocrinology, genetics, pediatric ophthalmology, neurosurgery, neurology and oncology.
“Throughout everything Aliyah has been through, she has not let it define her,” said Amanda, Aliyah’s mom. “She knows she is a special child. She knows that she has more doctors than one can count on both hands, and more doctors then most of her friends, but that does not put her down.”
In November 2015, a MRI showed that Aliyah’s tumor had grown. A month later, she had surgery to try to remove the mass, but the surgery was not successful. In January 2016, Aliyah had a port placement at Blank Children’s Hospital and started chemotherapy.
“Aliyah has been not only brave, but also a fighter,” Amanda said. “Aliyah is so strong and has shown not only me as a parent, but members of the community, that she is a fighter. She never complains about going to chemotherapy and always has a positive attitude.”
Aliyah has a very strong and outgoing personality for a five year old. She is an energetic and bubbly go-getter. She wants everyone to be happy and is always worried about everyone else’s feelings. She has more than 15 doctors she sees on a regular basis and is always asking about her doctors and nurses. Rather than focusing on herself, she is much more concerned about her doctors and what they are having for breakfast, lunch or dinner.
“Aliyah has gone through all of this with a smile on her face. She does have hard days and cries, but overall she tries to be happy every day and live her young life to the fullest,” Amanda said.