Patient Spotlight: Phillip

I’m often asked what brought us to St. Louis, since neither my husband nor I have family in the area.  A promising job offer in 2000 prompted us to move from North Dakota, but it wasn’t until years later that I would come to realize our move was “meant to be” for an entirely different reason.
Our son, Phillip, was born in 2003.  At his six month exam, our pediatrician noticed several birth marks on his torso, which led to a referral to Dr. David Gutmann at St. Louis Children’s Hospital.  We would learn that these birthmarks were actually cafe’-au-lait spots and one indicator of Neurofibromatosis Type 1 (NF1).  Phillip was five years-old when a second indicator, Lisch nodules on the iris of his eyes, was found, and the diagnosis of NF1 was confirmed.  People with NF1 are at risk for developing tumors throughout their bodies.  Naturally, we were scared and confused about what this meant for our child’s future.
Dr. Gutmann was wonderful, and he patiently answered our questions, as well as assured us that Phillip was capable of leading a normal, productive life.  He introduced us to his team of specialists at St. Louis Children’s Hospital and the powerful network of support they provide: physical therapy, occupational therapy, speech pathology, pediatric neuropsychology, orthopedic surgery, and ophthalmologogy– a group of talented and caring professionals that we’ve utilized over the years.
Another support that has been beneficial to our family is Club NF, offered through the Washington University NF Center.  Phillip was six years old when we first attended a Club NF activity, and he loved it immediately.  As he’s grown older, these free activities have allowed him to learn and practice social and motor skills by swimming, ice-skating, cooking, playing chess, dancing, painting, wall-climbing, animal encounters at the zoo, learning about dinosaur digs at the Science Center, and even yoga surfing!  While the kids play and interact, parents have the opportunity to hear from various speakers and enjoy making friendships, as well.  Questions from parents may vary from educational (IEP, 504, technology), emotional, social, and behavioral, and the Washington University NF Center staff does a fantastic job finding the right speakers to address these concerns.
Fast forward to 2019 . . . Phillip is now 15 and a typical teenager with his driver’s permit, cell phone, and love of gaming. A sophomore in high school, he’s an honor student, enjoys golf and weight conditioning, plays piano, and works to perfect his German.  NF1 does not limit him.  He now participates in Teen NF, which provides a friendship group that understands and accepts him because they are going through the same journey.  Knowing that there are other teens with NF1 has helped him be comfortable with his diagnosis.  He now enjoys volunteering at Club NF and taking on a mentor role for the younger kids.
I do believe our move to St. Louis was “meant to be” and we were guided here to have access to St. Louis Children’s Hospital and Dr. Gutmann and his team of specialists at the NF Clinic. We will be forever thankful for the dedication and compassion they show for their NF patients and continued research.
– written by Suzy Effertz