One of the most incredible things that has come as part of NF has been the amazing people that I have met. Jessica is one of those unexpected gifts of my life. She is fire and fierce love, and if she considers you a friend, then you know your “6” is covered for life…

Jessica first learned about Neurofibromatosis when she was 12 years old. She had surgery to remove a tumor and was told she “simply had NF1”. Mild, no big deal, nothing to see here. 

Had that been the case, the “professional” remarks still would have been remarkably incorrect.  

A harrowing odyssey through terrible storms and painful battles was ahead.

In her 30s an MRI revealed a tumor growing on her eardrum along with 5 more tumors in her brain, upon further imaging a 9 cm tumor AND a cyst the size of a golf ball was revealed to be growing at the top of her spine. 

As a single mom with 4 kids Jessica had been pushing through extreme pain, she had a 6 month old and three other young kids afterall.

Immediate surgery was imperative and while she knew a 2 week hospital stay would be hard, she believed that after a month, she would be back to caring for her kids, her home, and all of the people and things she loved. 

5 days after surgery her body was far from recovering. Numb, paralyzed, and lifeless from the neck down with next to no hope from her care team that she would ever recover function or regain any feeling in her body whatsoever.

For the next 30 days she lived away from her children in a rehab hospital, too far to see them regularly, but pushing through spinal cord injury and pain to move, walk, and care for her own body’s basic needs in order to get back to them. 

They were hard days and the darkest nights, so still unable to walk and with permanently paralyzed hands Jessica left the rehab facility to get back to the one role that defines who Jess is at her very core – as mother to her beautiful and very loved children. 

Slowly, over 6 months, Jess began to painfully walk, move, and care for herself, but as her steps progressed, her hearing got worse. 

Surgery to remove the tumor on her eardrum was followed by pneumonia, a ruptured eardrum, and while in the ICU she became completely deaf with no chance of recovering any sense of hearing.

Subsequently the fluid buildup in her brain required a special tube pushed up her spine and into her brain to relieve pressure and access fluid and prevent it from continuing to ooze out of her nose. 

She kept moving forward, and as she did, she discovered more and more about the condition she believed she was living with. Rather than a “Mild case of NF1” she learned about as a 12 year old, she in fact had NF2 (now referred to as NF2 related Schwannomatosis).

Jessica was galvanized to rise from the ashes of her own horrifying situation and fight for herself and the NF community. 

Buoyed by a few years of feeling relatively good all things considered, Jess was not expecting her routine MRI to reveal tumor regrowth on her spine or to be tasked with deciding between very risky surgery that would almost certainly result in complete paralysis, chemotherapy, or radiation treatment. Always putting her family first, Jess chose radiation based on the treatment center’s proximity to her home.

The regime was brutal, radiation 5 times a week the entire month of August, side effects left her with lost and damaged teeth, thinning hair, burnt skin, and massive weight loss from her already thin frame.

Yet NF wasn’t done trying to take Jessica Contreras down. 

Swelling in her brain was causing the left side of her body to go numb, resulting in numerous dangerous falls and leaving her with no option but chemotherapy. Far from home and family, Chemotherapy was not just inconvenient, it was terrifying. 

But NF did not win. Grit, determination, and the unwavering devotion to her kids, family, friends, and NF Community is what kept Jessica moving forward, slow and awkward step by unbalanced and painful step. 

She walks for awareness and for hope, she walks on painful nerves to shine a light on NF to show the world that access to care is needed for herself and for the millions living with all forms of NF and Schwannomatosis. She keeps walking and advocating for informed and educated healthcare providers who understand what NF is and what it isn’t so that future patients have the best information and resources for care that results in the best possible outcomes. 

She advocates by sharing her story, loving her friends, and finding the family sitting at the edge of the room because they are too afraid to enter the unknown. 

Anyone living with NF knows that so much of our story cannot be told simply or easily. There are only so many parts that can be made compact enough to be written down. As staggering as her story is to read, imagine living through it, imagine that this is JUST the tip of her massive iceberg.

Through the crashing thunder and surrounded by threatening lightning strikes Jessica sees her faith as a lighthouse in the middle of the storm and the unanswered questions. With this powerful bulwark she not only survives the impossible, but gives light to others. Like a candle in the dark and with a mother’s tender heart for those living with NF Jessica wants her NF Community to know that though we live every day with the fear of the unknown, we do not fight alone. Especially if Jess is your friend.