Eli Duby has undergone serious health problems from the time he was a baby when he was diagnosed with a rare eye condition. He was also born with two small spots on his back which his pediatrician assured his family were only fleshy moles. Nothing to worry about.
When he turned 5 his mom, Hannah, noticed one of the spots had grown bigger. To be on the safe side she took Eli to a dermatologist thinking she would be assured again that the moles were nothing to worry about. But the visit changed the course of the family’s life forever.
After a biopsy Eli was diagnosed with the rare genetic disorder, Neurofibromatosis.
“I was home alone and turned to Google since I had never heard these words before, Hannah said. “It was without a doubt one of the most terrifying moments of my life. I felt so alone and scared, and I remember feeling that way for the first year.”
Neurofibromatosis, or NF, causes tumors to grow on nerves throughout the body and can lead to blindness, bone abnormalities, cancer, deafness, disfigurement, learning disabilities, and excruciating and disabling pain. NF affects one in every 3,000 people regardless of race, gender/ethnicity, or age. Only one in 25,000 people worldwide are diagnosed with the rarer form of this disease, Neurofibromatosis type 2, which is what Eli was diagnosed with. He is one of the 10% of people diagnosed in childhood.
He was born with a small cataract in his right eye. His left eye had a more serious retina abnormality, causing his retina to detach when he was just 12 months old. When he was a toddler he and his parents spent much of their time traveling to eye specialists trying to save the vision in his left eye. But doctors were unable to save it and he is blind in that eye.
The Duby’s journey took them from Children’s Mercy Hospital in Kansas City where they had genetic testing to confirm NF2, to loading up the family and driving to John’s Hopkins in Baltimore, Maryland to see an NF2 expert.
While Eli is now monitored in St. Louis much has changed since his diagnosis six years ago. The 12-year-old has undergone two surgeries to remove tumors pressing on his spinal cord.
He is also monitored for his bilateral Vestibular Schwannomas, or auditory tumors on a cranial nerve through frequent MRIs and hearing tests.
“Much of NF is out of our control, but it gives us comfort in knowing that our boy has a team of great doctors in his corner, and we have met so many incredible people along our journey from the NF community, through the Children’s Tumor Foundation, both nationally and locally,” Hannah said.
The Duby’s journey through NF has been complicated by the COVID-19 pandemic. After Eli’s most recent major surgery this year to remove a tumor on his spinal cord and with the fear and uncertainty of the pandemic and her vulnerable son recovering from the surgery and even more immunocompromised, she made the tough decision to leave her job as a nurse at a local hospital, because as a mom she felt it was necessary in order to protect Eli.
“This year has been full of unexpected challenges that have forced us all to be flexible and roll with constant changes,” Hannah said. “We have all been affected by the Covid-19 pandemic, and when complications from NF are added, you are reminded that you are not always in control of the direction life takes you.”
With the spreading virus Hannah said big decisions had to be made and like many NF families, doctor’s appointments and procedures had to be postponed. But even with the threat and uncertainty of COVID the family has stayed optimistic and hopeful that they will not only get through the pandemic but that their fundraising help with the Children’s Tumor Foundation, a leader in the fight against this genetic disorder, will speed up research on NF. While Eli’s tumors are currently stable, his family knows from past experience that this can change at any time and that it is crucial for communities to work toward raising awareness and funds to fight this genetic disorder.
Eli’s family and friends have formed Team Eli’s Avengers. They will gather virtually for a Zoom rally to kick off the Shine a Light NF Walk in Kansas City on Sept. 26. Eli’s Avengers joins the NF community from across Kansas and Missouri to bring Neurofibromatosis out of the shadows and raise critical funds for research.
Following the virtual kick-off, patients, families, and teams will go for a walk in their neighborhoods with modifications made to protect the health and wellbeing of the participants.
“Since there is no cure for NF yet, we need to do everything possible to raise awareness and funds for continued NF research, leading to better treatments and a brighter future,” Hannah said. “We have met some of the most amazing, inspiring families who are going through similar struggles through our Kansas City NF Walk.”
Eli’s family knew from the time he was born that he was going to be an amazing person and Hannah said he has proven it every day of his life.
“He is so tough, brave and even as a small child has always had such a love for life,” Hannah said. “He refuses to let anything or anyone hold him back, and even with the setbacks he has already faced with NF2, he has never skipped a beat. He has played just about every sport out there. He is smart, level-headed, and witty, loves his friends and video games. Our boy has taught us so much about life and continues to amaze us with his resilience, kindness and strength. He is one of the toughest people I have ever known and is truly a fighter and my inspiration. But it’s our job to help him fight and we will, until there’s a cure.”