awareness on genetic disorder
LONG HILL TWP At first glance, five year-old Lexi Kranz is a beautiful, mischievous little girl with a great smile.
�She�s a handful,� according to her father Pete Kranz.
You�d never know that there are about 300 non-malignant tumors growing in her little body.
When she was two years-old, Kranz was diagnosed with Neurofibromatosis (NF) Type I, �a genetic disorder that causes tumors to form on the nerves anywhere in the body at any time,� as defined by Neurofibromatosis, Inc- Mid-Atlantic, a support group for people afflicted by the disease.
NF-1 is �one of the most common genetic disorders� in the country, although it�s not well known, according to the non-profit organization.
There is no cure or treatment for this disorder.
Kranz�s father and mother, Lisa, a housewife, are organizing a bowling fundraising event to benefit the Tomorrows Children�s Fund for cancer and blood disorders, at Hackensack University Medical Center, on Prospect Avenue, Hackensack.
The event will take place from 6 p.m. to 10 p.m., Saturday, Aug. 21, at Brunswick Edison Bowling Alley, 1695 Oak Tree Road, Edison.
Her parents said they decided to host the event because it was time to do something. They want to help more people become aware of NF-1.
The bowling alley will close down for the event and the couple has sold 20 tickets so far. They hope to sell 200 tickets in total and hold the event on a yearly basis, with next year�s proceeds benefiting the Make-A-Wish Foundation.
�It�s Never Going To End�
In the past year, Lexi Kranz has had 39 doctor appointments.
�It�s never going to end,� said Pete Kranz, a self-employed contractor. The little girl sees eight doctors who are trying to get the disease under control. Her neurologist, according to her parents, considers the growth rate of her case to be one of the worst in a child.
Usually, tumors don�t appear in people with this condition until puberty. Lexi Kranz�s tumors are clearly visible all over her body.
She refers to her tumors as �boo-boos� and lets her parents know when she is in excessive pain by covering herself with Band-Aids, according to her mother.
Lexi Kranz suffers from several side effects as a result, which include osteoporosis, growth hormone deficiency, headaches, learning disabilities and speech impairments. Her body is also covered by caf�-au-lait spots, which look like birthmarks.
�I feel like we�re in a maze and we�re hitting a wall at every turn,� Mr. Kranz said.
People can live with the condition well into their 50s, or later, he said. Because of the severity of their child�s case, her parents don�t know what her life expectancy is like. �It�s a wait and see situation,� he said.
The day after the event, the family will vacation in Florida, a trip organized by the Make-A-Wish Foundation including tickets to Disney World and a weeklong stay at Give Kids the World Village in Kissimmee, Fla.
The vacation will be a �surprise for all the kids,� said Lisa Kranz, referring to her other children, Megan, 7 and Deiter, 3.