Living life to the fullest …

Ali Didier of Bolingbrook may have neurofibromatosis, but she’s determined she — and not the disorder — will define her

Ali Didier of Bolingbrook developed her first neurofibromatosis tumor nine years ago, at the age of 10. The tumors have impaired her health, but she’s going to enjoy life as much as she can while she can, she says. In 2015, she visited the “Top of Europe,” Jungfraujoch in the Swiss Alps. (Courtesy of Ali Didier)

Ali Didier of Bolingbrook has had surgeries to remove tumors in her ear and one eye. She walks in Great Steps 4NF to support research into treatments and cures as well as to connect with others in the neurofibromatosis community. (Courtesy of Ali Didier)

Hundreds of walkers take part each year in Great Steps 4NF, creating a sense of community for those with neurofibromatosis and their family and friends. (Courtesy of Neurofibromatosis Midwest)

The Great Steps 4NF Walk raises money to support NF Midwest’s efforts to improve care for those with neurofibromatosis as well as to fund research. (Courtesy of Neurofibromatosis Midwest)

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By Christie Willhite (cwillhite@dailyherald.com)

Ali Didier could define her life in a bunch of ways.

She could be the girl who learned at 10 years old that all her life, her body would grow tumors that would sneak up on her and surprise her with pain or a sudden loss of ability.

She could be the girl who gave up her instrument and the sport she loved in middle school because her neurofibromatosis had her in and out of surgeries.

Or she could be the young woman who knows she soon will be completely deaf because of the tumor growing in her ear.

But Didier rejects all these interpretations.

Instead, she is a 19-year-old determined to live life as much as she can, to see and experience the world rather than wait for it to fall away from her.

She is the woman standing atop the Swiss Alps.

In her everyday life, the Bolingbrook woman has NF2, a form of the genetic disorder neurofibromatosis, in which tumors grow around the body’s nerve endings. The type of tumors that form and their locations determine which version of NF a person has. Some people see tumors grow in their skin, their brains and elsewhere. Others, like Didier, experience the tumors on their nervous systems where they can impair vision and cause hearing loss.

Didier could wait and hope that science finds a way to manage, treat, cure or even prevent neurofibromatosis, but that’s not her style.

Instead, she’s out walking in the Great Steps 4NF, raising money for St. Charles-based Neurofibromatosis Midwest , an organization that funds research and creates and supports treatment clinics. Didier has walked for the cause every year since she was diagnosed, and she’ll be among those walking Saturday, June 4, in Naperville in NF Midwest’s only fundraising walk in northern Illinois.

Today Didier tells us more about living with neurofibromatosis.

Ali Didier

I participate in the annual Great Steps 4NF Walk in downtown Naperville because nine years ago, I was diagnosed with NF2 at the age of 10. Since that time, I have experienced firsthand the horrible things this disorder will do to you.

Having NF2 means I will develop tumors on nerve endings inside my body, anywhere and anytime. To be brief, the major effects I have had from NF is an acoustic tumor removal six months after I was diagnosed, which removed the tumor and made me go deaf in my right ear. Since then, a similar tumor in my left ear is slowly destroying my hearing, and soon I will be completely deaf. Also, over the years I have had an eye surgery, chemo, and spinal surgery.

The tumors usually grow back after removal, and there is not much the doctors can do for you. I will continue to have more problems and surgeries my entire life because there is no cure for NF.

I think the hardest part of having this disorder is that nobody really understands your situation. Most people do not know anything about NF, so they do not understand what you go through on a daily basis.

The other part that is hard for me is basically losing a part of my youth because everything revolves around my medical appointments and surgeries. I was forced to quit playing my instrument in middle school, and soccer, the sport I loved to play so much, because I was physically unable to due to a surgery.

NF will slowly destroy your body, and it can eventually kill you.

The most surprising thing about life with NF is that you never know what will happen next. There are specific symptoms most people get with either type, but everyone is different and one day you could wake up completely deaf, blind or paralyzed.

NF can define your life if you let it, that’s why I try to make the most of my youth and have fun while I am still able. NF has taught me that no matter how bad things are in life, they could be much worse, so I am thankful for every day that I still have some hearing left and the ability to do the things I love.

I am also thankful to have found NF Midwest and the walk near my hometown because I have met amazing people here and get endless support. I have been participating in the walk ever since I had my first surgery and it is a great way to get involved in the NF community and support each other. My team at the walk is Ali’s Gators and I look forward to the walk every year. The walk is a fun and great way to help find a cure for NF.