Life of an NF Hero

Jesse just turned 8 years old and has Neurofibromatosis (NF1). This means he has multiple café-au-latte spots (coffee colored birth marks), about 20 – 30 dermal neurofibromas (small tumors), at least 1 plexiform neurofibroma (more complex tumor), an optic pathway tumor (brain tumor behind his left eye), his legs often hurt for an unknown reason, nerve pain across his shoulder blades that causes him to scratch and dig at his skin until he bleeds and scars, and has lived with chronic/severe nerve pain at the back of his head. Even though one of his NF symptoms is a brain tumor, Jesse’s worst NF Manifestation is the head pain. Raging cries of pain do not begin to describe what he has gone through. He has had to take liquid pain medication 3 times per day, two additional pain pills at night, and has had 4 surgeries to help him with the pain. He is just a little boy. His latest surgery helped incredibly with his pain with a 90% improvement and the great milestone of Jesse being pain medication free for a short time.  Even though he has had to go back on pain medicine, the surgery was considered a great success for improving Jesse’s quality of life.  His newest surgery is to have two plexiform tumors removed from his right bicep and his right flank.

Not long ago, someone told me that Jesse must have walked into a nest of mosquitos, he had bites all over him. My reply, “no, those are tumors”.  They are bulging out of his body... and those are just the ones that we can see.

By coming to this page or helping us in the past or future to fight against NF, you are all ANGELS 4 JESSE

Jesse goes under general anesthesia several times a year for MRI’s to check the brain tumor he has and to search for others.

Left, Ayden has lost her right leg and wears a prosthetic, Jesse suffers from chronic pain, and Izzy has gone through nearly 100 chemotherapy treatments. This is just one example for each of them of the many manifestations NF has caused their little bodies.  
Extraordinary kids.
They deserve better.

A little About Me

NF Heroes - Ayden, Jesse, Izzy

The Markland’s are proud supporters of the Children’s Tumor Foundation - Ending Neurofibromatosis through research. 

Jesse’s mommy, Jill, proudly serves as the Children’s Tumor Foundation Ohio Chapter President, the National Chapter Council President, and on the Foundations Board of Directors

Current Fundraiser
**Cupid’s Undie Run 2014 HERE**
**Racing4Research HERE**

2011 Fundraisers
Racing4Research Effort HERE
Race Across America Effort HERE