See all

Patient Spotlight: Lexi Journey with NF1

Forward Strides 4NF: Walking for awareness, Racing towards a cure!  Forward Strides 4NF is a charity that I started in 2016 in honor of two very special people who both deal with Neurofibromatosis (NF) on a daily basis – my husband, Alex, and my daughter, Lexi.

Alex was diagnosed with Neurofibromatosis type 1 (NF1) when he was in the second grade.  NF1 caused some learning difficulties that he was able to overcome with the help of some wonderful teachers at St. John’s Lutheran School. After learning of his NF1, he had a team of incredible doctors in St. Louis who monitored his condition on an annual basis. Alex had some minor surgeries to remove some of the neurofibromas on his body. He feels very fortunate that he has been able to live a normal, happy life. He has a passion for the outdoors, and enjoys hunting and fishing.

Lexi was born with a plexiform tumor on the bottom of her left foot and a leg length discrepancy. As a result, Lexi currently wears leg braces and inserts in her shoes, as well as a lift on the bottom of her right shoe. Since the age of 5 months, she has had several MRI scans and routine eye exams. She has also had an ankle surgery, where they placed a plastic implant to help with the stability of her ankle, and two staples to slow down the growth of her ankle bone.

Lexi receives both physical and speech therapy each week to help with her low muscle tone and communication skills. She is a very strong, independent four-year-old who doesn’t allow NF1 to limit her daily activities. She loves to swim, has participated in tumbling, and is currently taking dance lessons. Even with her braces and shoe lifts, she keeps up with the other children to the best of her ability.

NF1 is a worrisome genetic disorder because of the “unknown.” No one individual is the same. You don’t know what to expect. Alex has overcome minor hurdles with his NF1, but we still face hurdles with him. Education is key with any genetic disorder. Staying abreast of all the research and medical advancements going on in the NF world is very important. We are very thankful for the progress that Lexi has made overcoming some obstacles that she has faced with already. We could not have done this without Dr. Gutmann and his amazing team. Since Lexi was 10 months old, she has been seeing Dr. Gutmann annually for her exams. We have also been so fortunate to have one of the best physical therapists, Dr. Courtney Dunn, who is also a part of the NF Center team.  Since she was 18 months old, Lexi has attended the Beat NF music motor therapy program offered through the Washington University NF Center.

Trying to reach out in the St. Louis city community to see who else is affected with NF1 is challenging. In 2015, I helped organize a Great Steps 4NF walk in conjunction with NF Midwest. After raising over $16,000 for Great Steps, I decided that I wanted to help raise money that stayed here in the St. Louis community. In 2016, Forward Strides 4NF was formed. For the past 2 years, we have hosted a 2-mile family fun walk in Valley Park, MO. These events occur at the end of September each year, and 100% of our proceeds go to the Washington University NF Center.

Our walks have definitely been a huge success. We raised $19,351.00 in 2016 and $18,679.00 in 2017. We have had over 200 registered walkers both years, with over 30 volunteers. Entertainment at the event included an inflatable slide and bounce house, bubble bus, face painting, Minnie Mouse and a clown that handed out balloon animals. In addition, the participants were greeted by Fred Bird and Louie at the finish line. We also hold a raffle, which included over 120 amazing items; this proved to be a HUGE attraction that alone generated over $4,300. Lastly, local restaurants donate beverages, snacks and food for all the participants after the walk is completed.

Trying to maintain a positive outlook given the diagnosis of NF1 is sometimes hard. There is a not a day that goes by when we don’t think about the NF community. However, we don’t let NF1 control our life, we try to run it ourselves. We keep up with our weekly therapy appointments, we are always learning more about NF1, and we stay up to date about new medical advancements. Importantly, we do our best to raise money to support the outstanding research at the Washington University NF Center. We are walking for awareness every day, and racing towards finding a cure in the future.

Mark your calendars for Saturday, September 29, 2018 for the Forward Strides 4NF Walk. Join our Facebook group as well: Forward Strides 4NF to keep up with quarterly fundraising events and updates regarding the walk.

-Written by Gina Wilburn (Mom)