Liam has juvenile myelomonocytic leukemia (JMML).This is a rare leukemia associated with NF. He had two rounds of chemo, a bone marrow transplant and is now in isolation until the new year.
Liam was born full term a healthy 7lb 11 oz baby boy on June 20th 2013. He was born on his daddy’s birthday!
Liam was doing good until he turned 4 months old. He became constantly sick. He was losing weight and we couldn’t figure out why.at the age of 7 months the doctors sent us to cooks hospital downtown to test him for cystic fibrosis. Liam had become so dehydrated that they couldn’t do the test. They sent us home. In the parking lot I received a call from the genetics doctor urging me to get Liam into the ER right away. That call saved Liam’s life. Liam was admitted into cooks ICU unit for 10 days. He had failure to thrive , low sugar levels . Acute gastroenteritis , Poor muscle tone. While there among a number of many things Liam was Diagnosed with a disorder called neurofibromatosis. It causes tumors to grow on the end of your nerves. Liam has NF1 which occurs in 1/3000 people.
Liam was sent down for an MRI of his brain. The results showed at that time small brain lesion. In 12 months Liam has had an additional 4 sedated MRI’s .In February of this year they found an optic glioma tumor on his left eye nerve.