Children's of Alabama HomeChildofChildrens_logo
toptable
  Find a Story
MaryKathryn_Lawrence.jpg

Neurofibromatosis
Mary Kathryn Lawrence

On the surface, Huntsville native Mary Kathryn Lawrence is like any other teen. She enjoys social events, and in high school, she was a Diamond Doll for the baseball team, a member of the swim team and even worked as a lifeguard. Now, like other 19 year olds, she’s learning how to navigate college life. Mary Kathryn also has another focus – living with neurofibromatosis (NF).

When Mary Kathryn was a baby, doctors suspected she had NF, a genetic disorder that causes tumors to form on nerve tissue, even though at the time there was no testing available to confirm it. “She had a fatty tumor on her arm, and even as she aged, the tumor would just never go away,” said her mother, Mary Carol. “I felt that wasn’t the end of the story. I took her to see a pediatrician who specialized in genetics, and he thought because of several other physical markers that she likely had it.”

A few years later, Mary Kathryn was diagnosed with scoliosis. At age 3, she was admitted to Children’s of Alabama for back surgery. When Mary Kathryn was about 5, doctors were able to remove the tumor from her arm and officially diagnose her with NF type 1, which causes cell overgrowth. Mary Kathryn had a growth in her back, which caused the curvature of her spine. It also made her more prone to tumors. At age of 7, she was diagnosed with an optic glioma and went through traditional chemotherapy for about 15 months. Then, at age 13, she had a second brain tumor on the brain stem, which required surgery and another round of chemo.

“In between her brain tumors, she had to have two arm surgeries and a second back surgery,” said Mary Kathryn’s father, Scott. “But luckily, Dr. Alyssa Reddy at Children’s has been her doctor since her official NF type 1 diagnosis. She has coordinated every surgery with the different surgeons and worked with us through it all.”

The constant visits to the hospital for MRIs, surgery and chemo have been difficult over the years, but a positive note has been the doctors and staff the family has come to know, said Mary Carol. “At Children’s, they really take care of the patient first,” she said. “They have a real relationship with the patient, so Mary Kathryn has developed personal relationships with many of them. In fact, she’s gotten Christmas cards from many nurses over the years and many of them have called and emailed just to check and see how she’s doing.”

During her recent freshman year of college, Mary Kathryn was diagnosed with two more brain tumors. While she hasn’t had surgery this time, she is undergoing two different types of chemo to fight them. While the tumors have been very invasive—“It’s affecting her speech, handwriting and walking,” said Scott—they are receding. The family hopes Mary Kathryn will be off the medication within a year.

“My road through life has definitely been bumpy so far, but I am confident that God has great plans for me,” Mary Kathryn said. “That plan may be revealed while working in my career once I graduate from college or simply in my testimony to others. Either way, I accept that my path will most likely continue to be different from most, but it is my path and special to me.”
More survivor stories
 
bottomtable
©1996-2014 Children's of Alabama • 1600 7th Ave. S. Birmingham, AL 35233 • 205-638-9100
The information/stories contained on this site are the property of Children's Hospital of Alabama (Children's of Alabama) and cannot be reprinted, republished or otherwise disseminated without the express permission of Children's of Alabama Corporate Communications, subsequent to approval by the patient, patient parents or guardian.