Neurofibromatosis Type II: Ilya’s Story of Hope

Ilya's story of hope with neurofibromatosis type 2 (NF2) | helloHOPE Story

We had the privilege of serving alongside Ilya during our week with the Cornerstone Preparatory IMPACT team. We were aware that he was walking through medical challenges, but through the course of the week, we watched him serve countless families. His refusal to be a victim of his own medical diagnosis (Neurofibromatosis Type II) was a contagious inspiration for us. By the end of the week, Ilya approached us and said that he was ready and interested in sharing his story on the blog. It has been an honor to get to know Ilya and his dad, Todd, and share their journey of hope with you.

The Shock of a Diagnosis

Ilya’s story begins about a year and a half ago with a routine eye exam. When the optometrist asked him to cover his right eye, Ilya realized with great concern that he couldn’t see out of his left eye and that the room was nearly dark. The doctor recommended that he go immediately to a local hospital to see a retinal specialist. Needless to say, Todd and Ilya hurried straight there to see if they could get to the bottom of what was going on.

The retinal specialist did a series of tests and determined that Ilya’s retina, which had been the main concern, was fine. The doctor then turned to Todd and asked, “How much do you want to know?” Todd remembers with clarity the gravity of that moment, sensing that the news wasn’t good.

What they discovered was that there was likely a tumor putting pressure on Ilya’s optic nerve. The weight of the news and fear of what lay ahead sunk in. Todd was told that it would take over a week for them to see the next specialist — a neuro-ophthalmologist, but he was able to convince the doctor to work them in the next Monday.

The next round of testing included a specialized MRI of Ilya’s brain and confirmed the presence of the tumor wrapped around Ilya’s optic nerve. At the same time, they discovered that Ilya also had tumors wrapped around each auditory nerve and throughout his head and spinal column. The diagnosis was neurofibromatosis type 2 (or NF2), which is a genetic disease that causes noncancerous tumors to grow throughout the nervous system. The initial diagnosis was a shock for them both as they tried to understand what life with this incurable disease would look like and how treatment would affect them.

Wrestling with a New Reality

Ilya remembers the first proposed treatment plan — a general chemotherapy course to try shrinking all of the tumors at the same time. For him, the memory of sitting in the hospital exam room, hearing that he would need a port put in for a noncancerous genetic disease was an emotional low. How could this be happening?  

This prompted Todd and Ilya to seek out other doctors with expertise in treating NF2. Through Todd’s tireless dedication to finding the best help for his son, they ultimately ended up working with two of the top NF2 specialists in the world. They have wrestled with the different treatment options and have decided to carefully monitor the growth of the 20 current tumors to establish a baseline and treat specific challenge areas as they come up.

As you can imagine, the decisions that they’ve had to make along the journey certainly aren’t easy. One example they shared of this struggle was a recommendation to allow the auditory tumors (schwannomas) to go untreated for the time being. Todd struggled with the idea of leaving something untreated in his son, but the doctor explained that the tumors were too risky to attempt to surgically remove. Additionally, Ilya’s doctor felt like it was more important to focus their efforts on preserving sight in the unaffected eye by protecting the optic nerve as much as possible.  

While they are receiving excellent medical guidance, Todd and Ilya have still experienced the full range of emotions, from the relief of finding exceptional medical support to the fear and sadness of grappling with the prospect of lifelong side-effects from NF2. Ilya shared with us that throughout his journey there were times that the fear and uncertainty of the circumstances were difficult to bear. He candidly asked questions like, “Why does this have to happen to me?” and “Why did so much difficulty have to happen at the same time in my life?”

This experience, though, is what has driven him to dig into what hope means for him and share his story to encourage others in similar circumstances.

Not Defined by a Diagnosis

During our conversations, I asked Ilya and Todd how they managed the desire to know more about the disease they are facing without being defined by a diagnosis. What they shared was drenched in wisdom.

As a parent, Todd takes his role of providing for and guiding his son seriously, and understanding NF2 is no exception. He admitted that he “obsesses” over the disease more than Ilya in researching the latest options and findings, but his heart is clear in wanting to provide “the best future Ilya can possibly have.” It’s also encouraging to hear about the ways that Todd keeps things from being too serious by making sure that he and Ilya take opportunities to decompress, laugh, and have fun.

Todd also talked about the importance of not belittling the problem or making light of the circumstances they were facing. He shared about one hospital chaplain in particular that simply takes the time to sit, listen, and talk about how they are holding up. This chaplain gave them powerful advice in not being defined by a diagnosis: “Don’t give the disease any more power than it already has, and don’t ignore the power that it has.” This advice has helped them to chart a course that still enables them to laugh, serve, and enjoy life, while squarely addressing the difficult decisions and challenges they face.  

While Ilya also tries to understand the NF2 disease and focus on information from reliable sources, he said that one of the most powerful tools for him is the simple reminder that he isn’t alone and that he doesn’t have to live with a sentence of NF2 hanging over his head. Prior to and since receiving the diagnosis, Ilya has battled some big questions, but he has courageously come to accept the basics of his condition.

It’s that acceptance, combined with Ilya’s strong faith and heart of service that makes his example so remarkable. Watching him serve countless families during IMPACT Week, refusing to be a victim of his own medical diagnosis is a contagious inspiration.

Ilya's Story NF2 Pic 1 | helloHOPE

Hope with Neurofibromatosis Type II

So what does a life of hope with NF2 look like? The Lord has clearly met Ilya with a sense of peace. Ilya explains that today he’s in a much better place than some of the early days of their journey. Some days the what-ifs about going deaf or losing vision are strong, but he holds onto hope:

“Even though it sounds really bad, if you have hope and faith through your circumstances, you can know it won’t be the end of the world … For me, hope is: even though you’re not sure of the future and what’s going to happen, you know that God’s going to be there with you. Even though you may not always have an answer or know what’s going to happen, you know that God is there with you.

Without God, I wouldn’t have the hope that I do now, and I wouldn’t be able lay all of my worries on Him and hear Him tell me that everything is going to be okay. I know that without that kind of reassurance, I would not be able to handle day-to-day life without constantly wondering and worrying.”

I also love what Todd has to say about hope from his perspective as a parent:

“Some people think that hope is a destination, but it really is a process. I would love to say that hope is that they come up with a cure for the disease. That is a hope, but that’s not the only hope.”

As for Ilya’s future? From late elementary school age, well before he knew about his NF2, he has had a heart for children and families facing medical challenges — specifically St. Jude Hospital. His dream is to one day work in the medical field to serve other families. In the meantime, he’s finding ways to act on his desire to serve.

Faith is the anchor of Ilya’s hope and we are inspired by the way he puts that hope into action.

Update: Since publishing this story, Ilya and Todd shared an update with us that includes treatment decisions for NF2, brain surgery, and how they're processing the emotions of a chronic disease. Read more here: "Neurofibromatosis Type II: Ilya’s Story of Hope [Part 2]".