Dr. Jonathan Mink, chief of pediatric neurology at the University of Rochester Medical Center, plans to start up his own version of the NF Center later this year and considers Gutmann's clinic a model.

"It's a one-stop shop," Mink says. "The clinic coordinates the care of patients who need to see multiple specialists. David cares for his patients. He manages traffic flow. There's some rallying of the troops to get everyone motivated, but a lot of it is making sure things run smoothly."

In keeping with his mission to treat the whole patient, Gutmann wanted to take the clinic beyond medicine, to help the patients and their families better navigate daily life with NF1. A few years back, the center's physical therapist came up with a plan:

Dr. David Gutmann in the lab. He has been studying NF1 for more than twenty years. Slideshow: Kids with NF1 and their families at "Club NF"
Jennifer Silverberg
Dr. David Gutmann in the lab. He has been studying NF1 for more than twenty years. Slideshow: Kids with NF1 and their families at "Club NF"

Take the kids rock climbing.


Physical therapist Courtney Dunn joined Team NF nearly three years ago. She's energetic and intensely charismatic. Gutmann describes her as "like a magnet. She'd walk down the street, and people would ask her, 'What can I do?'" Young NF1 patients clamor for the opportunity to sit in her lap and listen intently, even when she tells them stuff like, "Remember, you're brothers: You look out for each other." At the clinic she evaluates patients for developmental delays and works with them on gross motor skills.

Two years ago Dunn came up with the idea of conducting sessions to teach parents how to bring physical therapy into their homes. ("I often hear from parents, 'If my child had a therapist for a parent, we could have therapy all day long, and it would make the kid better,'" she explains.) At the same time, she saw an opportunity to bring the kids together, perhaps encouraging them to broaden their horizons and build confidence.

Thus was born Club NF.

It started small, with a few kids at a public library learning to play chess. Nowadays between 30 and 60 people, including patients, parents, siblings and even a few non-NF1 friends, meet on consecutive weekends six times a year. A grant from the St. Louis Children's Hospital Foundation pays for the outings. While the kids do activities, the parents meet in small groups to talk about their experiences raising NF1 children and discuss practical matters, such as how to integrate therapy into family activities and how to explain the condition and limitations of NF1 to teachers and school administrators.

It's generally agreed among NF Center staff that the session at the Upper Limits rock climbing wall in the summer of 2011 was the most successful the program has had. "The kids were all in harnesses," Dunn recalls, "and they climbed the wall like professionals. It was about ten or fifteen feet. The parents sat on the ground, and some of them cried when their kids reached the top of the wall."

A more recent session at a west-county high school, though it was led by two members of STAGES St. Louis and centered on singing, dancing and theatrical games, wasn't nearly as dramatic.

But as actress Ashleigh Blevins and dancer Stephanie Fox lead the seven young participants through various activities culminating in a pair of song-and-dance routines — "Oh, the Thinks You Can Think!" from the musical Seussical and "Fireball" by Willow Smith — it becomes difficult to think of the morning's activities as physical therapy.

True, the kids tend to have trouble coordinating the singing with the pivot step and jazz hands, but so do the Team NF staffers and high school volunteers. And true, the kids are unruly. They'd rather play games than learn a dance routine, and at the games, they cheat. But there are no signs of tumors or anything else that would indicate that any of the children has a congenital disease, except for a pair of flesh-colored braces ten-year-old Sarah Branson wears on her ankles.

(Several of the families who come to Club NF have more than one kid with the condition, but none surpasses the Bransons, Sarah and her sister Lily, fourteen, and brother Isaac, seven. Their father, Charles Branson, has NF1, as does his mother. Pam Branson says she and Charles were aware they had a 50 percent chance of passing on the gene with each pregnancy. They were, she says, "blessed with all three.")

While the children rehearse, the parents gather in a nearby classroom to discuss how to be better advocates for their kids at school. Alicia Vallorani, the NF Center's clinical research assistant, and Dunn demonstrate different iPad apps, including games to help improve fine motor skills and a utility that converts PDF files into text documents so that kids who have trouble holding a pencil can do homework assignments electronically.

"Families with NF kids are such an open group," Dunn says. "They're searching for input and health. They're interested in things they can put into practice. They want specific tools to make sure the kids succeed. It's an easy group to work with."

When the parents wrap up, they venture into the auditorium to watch the dance routines. "Oh, no!" Sarah Branson groans at the sight of her mom. Isaac covers his eyes as he stumbles through "Oh, the Thinks You Can Think!"

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6 comments
mlmoyer55
mlmoyer55

Excellent article overall, most comprehensive real-world account of living with NF-1 I've seen. Thank you.

pam_hudson07
pam_hudson07

I found this article and research to be positive and hopeful.  Unfortunately, I am unable to share in this hope as I am presently watching a family member suffer with this condition without proper medical care. He underwent surgery while in grade school to remove tumors, and was given the diagnosis at that point.  Unfortunately, during that time, there was no discussion of ongoing treatment, neurological conditions, possible limitations, etc.  He currently has tumors on his back, lower adomen, and near his groin area which covers a lot of his body surface area considering he is over 30, but has the small frame of a 14-16 year old adolescent.  Without access to care, he self medicates, and his family has been unable to convince him to seek treatment due to financial limitations.  As I continue to search the WWW for methods to assist him, I would like to encourage all the parents with a child with this diagnosis to take advantage of all of the options that you receive regarding education, treatment, and DOCUMENTATION.  Unless this common disorder that no one has heard of is studied and documented more consistently, the symptoms (especially neurological) and affects on daily living will be considered unrelated as your 'seemingly normal' children are expected to become productive adults in society. 

jrisner
jrisner

Anon is correct and hopefully the author will update what is overall a very good article.  One of the challenges of NF1 is it's variability. Thankfully NF1 does not have the early death rates of some other genetic disorders (Huntington's disease, cystic fibrosis etc.) but you can die from it.  Most cases of early mortality occur when the plexiform tumors transform into Malignant Peripheral Nerve Sheath Tumors (MPSNT).  Fortunately this occurs in only 5-10% of the cases, but it is meaningful, and there are other complications of NF1 that can impact life expectancy.  John Risner

anon
anon

"One of the few certainties of an NF1 diagnosis is that the disease won't kill you."  A disappointing and inaccurate description of NF1. MPNST, tumor infringement on vital organs, airway obstruction, blood vessel anomalies leading to aneurysm/bleeding/stroke or other complications, and complications from severe hydrocephalus are just a few of the reasons people with NF1 lose their battle.  Common? no.... But these occur in NF patients and it is dismissive to make the claim listed above.  I am saddened that this sentence was included in an otherwise good article.  

scott19674
scott19674 topcommenter

Good story, strong work guys

 
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