In early 2021, Briley and Alexis Leggett found their lives in an unexpected trajectory. Their 10 month old daughter, Landry, was diagnosed with Neurofibromatosis Type 1 (commonly known as “NF1”), a rare genetic disorder that causes benign tumors to grow on nerves throughout the body. NF1 occurs in about 1 in every 3,000 births and is most often diagnosed in childhood.
Throughout the first year of her diagnosis, Landry underwent an MRI every few months to monitor for tumors and - if tumors were present - to monitor the growth. Unfortunately, an MRI confirmed that Landry had two low grade optic glioma tumors on the nerve that runs from the eye to the brain, and they were increasing in size…making the possibility of chemotherapy become a reality. A 54 week chemotherapy regimen began on January 7, 2022. 54 weeks of pain, pokes, stress, tears, out of town doctors appointments, therapy sessions, infusion rooms, missed events, and many, many prayers. After a full year of chemotherapy that resulted in significant shrinkage of the tumors, Landry happily got to ring the bell at Cook Children’s Hospital and say, “Peace out, chemo!”
When the Leggetts found out that NF1 can also delay physical and behavioral development, they were even more overwhelmed. As expected, Landry was delayed in walking and in speech. Her parents said that it was obvious that, even at an early age, Landry knew she was behind and not on the same level as other kids. She was quickly losing confidence. This was incredibly difficult for her parents to watch, but luckily that is when MCRC stepped in and became an instrumental part of Landry’s life. Since starting therapy almost three years ago, Landry has taken part in almost every type of therapy that MCRC has to offer. Her favorites are hippotherapy and therapeutic dance (she rocked it during the Taylor Swift-themed dance recital this spring!) She is growing each week in confidence, strength, and abilities…all thanks to MCRC and her amazing therapists.
Her physical therapist, Katie, said, “Landry is a sweet & active girl who has made major improvements in her physical abilities. She has met several goals in the past few months in the aquatic environment including balance, following multistep commands, and her jumping skills. I loved watching her grow during her time in our dance program. She is always the first to make a new friend or give us a hug anytime she sees her therapists!” Landry has also made great progress towards her articulation goals during the 6 months she has been in speech. Allison, S.L.P., said, “The amount of energy she brings into my therapy room is unmatched! She is the most joyful little girl and is so excited to come to speech each week. I am so proud of the progress she has made.” In occupational therapy, Landry has conquered so many goals while working with Susan. “Since she was evaluated in early 2023, her fine motor skills have improved from scores in the poor and below average range to scores in the average range in both areas tested! She is an inquisitive young lady who constantly seeks out new things, asks excellent questions, and is very observant. Landry is also quick to notice if a child is having or might encounter difficulty and stops to offer her assistance!”
Moving forward, the Leggetts will continually monitor Landry with an MRI scan every few months to ensure no new tumors show up and that the ones she does have don’t start growing again. In the meantime, four year old Landry will continue to light up any room she enters and approach each day with her joyful, bubbly, and energetic personality. Her mom said it best: “God is good, difficult times bring out the best in all of us, and…chemo is tough, but Landry Ellen is tougher!” She IS a tough kid and we are excited to watch her continue to grow and shine.
