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This is Pam and Adrian Lahr and Family

pamlahr@hotmail.com

Almont, MI

USA

Shanna was born in July of '02.  She had multiple problems at birth.  Looking back, many signs pointed to NS, but it took 9 mos. to get the diagnosis.  I am in awe of those children diagnosed shortly after birth; at least you know what you are dealing with from the start!  Shanna has the PTPN11 mutation.  She was also diagnosed with the rare form of leukemia, JMML, at 5 mos. old.  She went through multiple rounds of high-dose chemo and a stem cell transplant with her older brother as her donor and perfect match at only 11 mos. old.  She remains in remission today.  Other health issues associated with the NS include:  Pulmonary valve stenosis (corrected with balloon valvoplasty,) 2 ASDs (1 patched with the Amplatzer; 1 is pending repair,) Oral and feeding aversion with need for g-tube. We feed her a "blenderized" diet through the tube and since we started she has made huge strides toward becoming an oral eater. Shanna is also developmentally delayed.  She attends a resource room for 1/2 day and goes to "Begindergarten" for 1/2 day with an aide.  She also gets PT, OT, and Speech at school.  For more info about JMML, go to www.jmmlfoundation.org .  For more info on the blenderized diet go to:  www.blenderized-diet@yahoogroups.com .